Intensive Care Med DOI 10.1007/s00134-015-3712-6
Ken M. Hillman Magnolia Cardona-Morrell
WHAT’S NEW IN INTENSIVE CA RE
The ten barriers to appropriate management of patients at the end of their life
Ó Springer-Verlag Berlin Heidelberg and ESICM 2015
during their remaining few months of life. How did this happen, and what can be considered the top ten potential barriers to managing patients at their end-of-life (EoL) transition in a more appropriate way?
K. M. Hillman M. Cardona-Morrell The Simpson Centre for Health Services Research, South Western Sydney Clinical School, The University of New South Wales, Sydney, Australia
Potential barriers to EoL management faced by intensivists
Received: 9 February 2015 Accepted: 21 February 2015
K. M. Hillman ()) Intensive Care Unit, Liverpool Hospital, Locked Bag 7103, Liverpool, NSW 1871, Australia e-mail: [email protected] Tel.: 61-2-87383585
The top ten potential barriers encountered by intensivists in managing the EoL transition are presented in Table 1.
Unreal expectations People are constantly fed stories of medical miracles. Our society wants to believe that there are cures for most medical conditions, and members of the medical profession do little to put the miracles into perspective [2]. Patients and their carers bring these beliefs It has been more than 60 years since the concept of in- into the intensive care units (ICUs). In many cases, most tensive care was applied in Copenhagen, Denmark [1], people, including doctors, overestimate the benefits of and it was not until the 1970s that the concept became a healthcare and underestimate the harm of providing it [3]. recognised specialty with its own conferences, textbooks, Failure to discuss ageing and dying Getting old and journals, qualifications and societies. Intensivists have dying is not a common topic for open and honest dismade great advances in how to effectively sustain life and cussion, but keeping patients and families in the dark are probably now at the stage where the effective im- about the prognosis is not best practice [4]. The emphasis plementation of these lessons is as important as the on medical miracles is subtly extrapolated to deny ageing underlying knowledge. and the inevitability of dying. This attitude makes it difHowever, while intensivists have been concentrating ficult for intensivists to explain to the relatives of a patient on these advances, a major challenge has emerged, almost surrounded by life support paraphernalia that it is only imperceptibly. The majority of patients we are now ‘support’ and that dying is often inevitable [5]. treating do not have a single diagnosis; rather, they have multiple age-related co-morbidities that add up to a Medical education and training Physicians are trained clinical condition which, as yet, has no universally ac- to cure, rescue and save lives and to do ‘‘something’’ cepted name or score. Yet, we are still using the same other than confront relatives with reality and do nothing. technology to treat these patients that we used previously There is little emphasis in medical training on accepting to treat younger patients who had a single diagnosis and ageing and dying and being able to honestly discuss these potentially reversible conditions. Many patients now issues with patients and their caregivers [6]. Hope and spend their last few days of life on machines, and even the reassurance are important to both the patient and doctor survivors often live a severely compromised existence and, unfortunately, this need often trumps reality [3].
Table 1 Potential barriers encountered by intensivists managing end-of-life care Unrealistic societal expectations about what modern medicine can achieve Reluctance of society to discuss ageing, death and dying Lack of effective medical training in dealing with end-of-life (EoL). Doctors are often programmed to treat, not to reflect on the context of treatment Medical specialisation resulting in overlooking the patient’s overall clinical condition and prognosis Uncertainty is an integral part of medical practice and may be used as a reason for continuing active management, almost indefinitely Some healthcare systems provide financial incentives to physicians for continuing active treatment Ethical ambivalence—current ethical guidelines can be interpreted in many different ways Legal pressures—fear of litigation and of breaking existing laws around EoL treatment The conveyor belt to intensive care—healthcare systems tend to have inflexible approaches to dealing with serious illness, resulting in the inevitable admission of the patient from the community to acute hospitals and intensive care units regardless of prognosis Lack of alternative and perhaps more appropriate EoL care in many societies
Medical specialisation Increasing specialisation has resulted in our colleagues attempting to enthusiastically and incrementally improve the function of their own organs or systems without standing back and holistically reviewing the reality of an aged patient who may be close to the end of his/her life [7]. As a result, there can be subtle or even overt pressure from specialist colleagues to continue active management [8]. Uncertainty A major reason for the failure to address appropriate EoL care is uncertainty [2, 9]. Determining with accuracy exactly how long a person will survive with and without the support in an ICU is difficult. Moreover, variations in survival are largely influenced by the patient’s pre-existing chronic co-morbidities [5, 10]. Indeed, it is important that clinicians acknowledge uncertainty as an integral part of medicine and learn how to communicate it to family members. Individuals and societies will use uncertainty and lack of evidence in different ways to ethically and legally justify the continuing role of active treatment in patients at the EoL. There is an urgent need to develop tools and validate predictive models to reduce the uncertainty in prognosis [11]. Financial incentives In healthcare systems where there is a fee for services, there may be a perverse incentive to prolong active management, as that is the source of the physician’s income. Ethical ambivalence The ethical foundations for resolving issues around EoL care in the ICU are so flexible that they can become almost meaningless. For example, autonomy can empower the patient or their caregiver to demand active management with all technologies and drugs available despite the underlying prognosis. Autonomy clashes with social justice. Keeping one patient alive at all costs may have the ultimate result of denying many others access to basic medical care [12]. Benevolence may be used as a reason to discontinue active treatment in order to prevent suffering and maintain dignity [13], or it may be interpreted that continuing active treatment indefinitely is in the patient’s interest. Similarly, non-maleficence, or doing no harm, may mean withdrawing futile treatment or it may mean never
withdrawing active treatment under any circumstance. Emphasis—in terms of how and where it is placed—can be used to justify almost any medical action in the situation of managing patients at the EoL in an ICU. Legal pressures Different societies will attempt to address the issue of artificially maintaining life in different ways, and individuals within those societies may use the law in order to enforce their own opinions and will. It can be difficult to translate the cultural and ethical pressures of a society into tight legal guidelines for physicians and the healthcare system. Fear of litigation or acting illegally can become an important barrier for intensivists. The conveyor belt It is common for those with an acute illness, such as urosepsis, in the context of severe frailty to be taken to a hospital, resuscitated in the emergency room and admitted to an ICU. It is difficult for any one person or physician to confront these pressures, to stand back, to honestly explain the situation to the patient and caregivers and to pluck the person off the conveyor belt. Lack of alternatives Most people want to die in their own homes, and yet an increasing number will die in acute care hospitals [14]. Doctors and nurses with palliative care training can provide pain relief, symptom control and psychosocial support in specialised units, hospices or the patient’s home. Yet there remains a paucity of alternative healthcare models for managing EoL transition around the wishes and needs of patients and their caregivers, resulting in many patients being admitted to acute hospitals and ICUs.
Summary The development of ICUs as the final option for seriously ill patients, especially the elderly frail patient at the end of his/her life, has meant that intensivists have increasingly taken on the role of diagnosing the dying [15]. Our society, and even our medical colleagues, do not necessarily understand what we can achieve in ICUs, and even more importantly, what we cannot achieve. The next
crucial step for us as individuals, and through our professional bodies, is to engage our society in discussions on our role and encourage debate and discussion, being aware of the controversies that will inevitably result. Birthing in the 1950s was medicalised without discussion with women and their families. In a similar manner, dying has been medicalised in the twenty-first century [2, 7]. It has not been a conspiracy and the use of futile and
expensive treatment at the EoL transition is not necessarily anyone’s choice. The specialty of intensive care has a particularly important role in facilitating discussions with our society in order to define different ways of managing dying. Conflicts of interest None.
References 1. Lassen HC (1953) A preliminary report 7. Goodwin JS (1999) Geriatrics and the limits of modern medicine. N Engl J on the 1952 epidemic of poliomyelitis Med 340:1283–1285 in Copenhagen with special reference to 8. Hillman K (2010) Dying safely. Int J the treatment of acute respiratory Qual Health Care 22:339–340 insufficiency. Lancet 1:37–41 9. Connors AF Jr, Dawson NV, Thomas C, 2. Clark D (2002) Between hope and Harrell FE Jr, Desbiens N et al (1996) acceptance: the medicalisation of dying. Outcomes following acute exacerbation BMJ 324:905–907 of severe chronic obstructive lung 3. Hoffmann TC, Del Mar C (2015) disease. The SUPPORT investigators Patients’ expectations of the benefits (Study to Understand prognoses and and harms of treatments, screening, and Preferences for Outcomes and Risks of tests: a systematic review. JAMA Intern Treatments). Am J Respir Crit Care Med 175(2):274–286 Med 154:959–967 4. Truog RD (2011) Tolstoy on 10. Sellares J, Ferrer M, Cane F, Loureiro transparency and authority in end-ofH, Valencia M et al (2011) Preditctors life decision-making. Intensive Care of prolonged weaning and survival Med 37:1723–1724 during ventilator weaning in a 5. Lind R, Lorem GF, Nortvedt P, Hevroy respiratory ICU. Intensive Care Med O (2011) Family members’ experience 37:775–784 of ‘‘wait and see’’ as a communication 11. Cardona-Morrell M, Hillman K (2015) strategy in end-of-life decisions. Development of a tool for defining and Intensive Care Med 37:1143–1150 identifying the dying patient in hospital: 6. Soares M, Piva JP (2012) Physicians criteria for screening and triaging to just need to be better trained to provide appropriate alternative care (CriSTAL). the best care at the end-of-life. Intensive BMJ Support Palliat Care 5:78–90. doi: Care Med 38:342–344 10.1136/bmjspcare-2014-000770
12. Gill B, Griffin B, Hesketh B (2013) Changing expectations concerning lifeextending treatment: the relevance of opportunity cost. Soc Sci Med 85:66–73 13. Willmott L, White B, Smith MK, Wilkinson DJ (2014) Withholding and withdrawing life-sustaining treatment in patient’s best interests: Australian judicial deliberations. Med J Aust 201:545–547 14. Moses H 3rd, Matheson DH, Dorsey ER, George BP, Sadoff D et al (2013) The anatomy of health care in the United States. JAMA 310:1947–1963 15. Barnato AE, McClellan MB, Kagay CR, Garber AM (2004) Trends in inpatient treatment intensity among medicare beneficiaries at the end of life. Health Serv Res 39:363–375
Ken M. Hillman Magnolia Cardona-Morrell
WHAT’S NEW IN INTENSIVE CA RE
The ten barriers to appropriate management of patients at the end of their life
Ó Springer-Verlag Berlin Heidelberg and ESICM 2015
during their remaining few months of life. How did this happen, and what can be considered the top ten potential barriers to managing patients at their end-of-life (EoL) transition in a more appropriate way?
K. M. Hillman M. Cardona-Morrell The Simpson Centre for Health Services Research, South Western Sydney Clinical School, The University of New South Wales, Sydney, Australia
Potential barriers to EoL management faced by intensivists
Received: 9 February 2015 Accepted: 21 February 2015
K. M. Hillman ()) Intensive Care Unit, Liverpool Hospital, Locked Bag 7103, Liverpool, NSW 1871, Australia e-mail: [email protected] Tel.: 61-2-87383585
The top ten potential barriers encountered by intensivists in managing the EoL transition are presented in Table 1.
Unreal expectations People are constantly fed stories of medical miracles. Our society wants to believe that there are cures for most medical conditions, and members of the medical profession do little to put the miracles into perspective [2]. Patients and their carers bring these beliefs It has been more than 60 years since the concept of in- into the intensive care units (ICUs). In many cases, most tensive care was applied in Copenhagen, Denmark [1], people, including doctors, overestimate the benefits of and it was not until the 1970s that the concept became a healthcare and underestimate the harm of providing it [3]. recognised specialty with its own conferences, textbooks, Failure to discuss ageing and dying Getting old and journals, qualifications and societies. Intensivists have dying is not a common topic for open and honest dismade great advances in how to effectively sustain life and cussion, but keeping patients and families in the dark are probably now at the stage where the effective im- about the prognosis is not best practice [4]. The emphasis plementation of these lessons is as important as the on medical miracles is subtly extrapolated to deny ageing underlying knowledge. and the inevitability of dying. This attitude makes it difHowever, while intensivists have been concentrating ficult for intensivists to explain to the relatives of a patient on these advances, a major challenge has emerged, almost surrounded by life support paraphernalia that it is only imperceptibly. The majority of patients we are now ‘support’ and that dying is often inevitable [5]. treating do not have a single diagnosis; rather, they have multiple age-related co-morbidities that add up to a Medical education and training Physicians are trained clinical condition which, as yet, has no universally ac- to cure, rescue and save lives and to do ‘‘something’’ cepted name or score. Yet, we are still using the same other than confront relatives with reality and do nothing. technology to treat these patients that we used previously There is little emphasis in medical training on accepting to treat younger patients who had a single diagnosis and ageing and dying and being able to honestly discuss these potentially reversible conditions. Many patients now issues with patients and their caregivers [6]. Hope and spend their last few days of life on machines, and even the reassurance are important to both the patient and doctor survivors often live a severely compromised existence and, unfortunately, this need often trumps reality [3].
Table 1 Potential barriers encountered by intensivists managing end-of-life care Unrealistic societal expectations about what modern medicine can achieve Reluctance of society to discuss ageing, death and dying Lack of effective medical training in dealing with end-of-life (EoL). Doctors are often programmed to treat, not to reflect on the context of treatment Medical specialisation resulting in overlooking the patient’s overall clinical condition and prognosis Uncertainty is an integral part of medical practice and may be used as a reason for continuing active management, almost indefinitely Some healthcare systems provide financial incentives to physicians for continuing active treatment Ethical ambivalence—current ethical guidelines can be interpreted in many different ways Legal pressures—fear of litigation and of breaking existing laws around EoL treatment The conveyor belt to intensive care—healthcare systems tend to have inflexible approaches to dealing with serious illness, resulting in the inevitable admission of the patient from the community to acute hospitals and intensive care units regardless of prognosis Lack of alternative and perhaps more appropriate EoL care in many societies
Medical specialisation Increasing specialisation has resulted in our colleagues attempting to enthusiastically and incrementally improve the function of their own organs or systems without standing back and holistically reviewing the reality of an aged patient who may be close to the end of his/her life [7]. As a result, there can be subtle or even overt pressure from specialist colleagues to continue active management [8]. Uncertainty A major reason for the failure to address appropriate EoL care is uncertainty [2, 9]. Determining with accuracy exactly how long a person will survive with and without the support in an ICU is difficult. Moreover, variations in survival are largely influenced by the patient’s pre-existing chronic co-morbidities [5, 10]. Indeed, it is important that clinicians acknowledge uncertainty as an integral part of medicine and learn how to communicate it to family members. Individuals and societies will use uncertainty and lack of evidence in different ways to ethically and legally justify the continuing role of active treatment in patients at the EoL. There is an urgent need to develop tools and validate predictive models to reduce the uncertainty in prognosis [11]. Financial incentives In healthcare systems where there is a fee for services, there may be a perverse incentive to prolong active management, as that is the source of the physician’s income. Ethical ambivalence The ethical foundations for resolving issues around EoL care in the ICU are so flexible that they can become almost meaningless. For example, autonomy can empower the patient or their caregiver to demand active management with all technologies and drugs available despite the underlying prognosis. Autonomy clashes with social justice. Keeping one patient alive at all costs may have the ultimate result of denying many others access to basic medical care [12]. Benevolence may be used as a reason to discontinue active treatment in order to prevent suffering and maintain dignity [13], or it may be interpreted that continuing active treatment indefinitely is in the patient’s interest. Similarly, non-maleficence, or doing no harm, may mean withdrawing futile treatment or it may mean never
withdrawing active treatment under any circumstance. Emphasis—in terms of how and where it is placed—can be used to justify almost any medical action in the situation of managing patients at the EoL in an ICU. Legal pressures Different societies will attempt to address the issue of artificially maintaining life in different ways, and individuals within those societies may use the law in order to enforce their own opinions and will. It can be difficult to translate the cultural and ethical pressures of a society into tight legal guidelines for physicians and the healthcare system. Fear of litigation or acting illegally can become an important barrier for intensivists. The conveyor belt It is common for those with an acute illness, such as urosepsis, in the context of severe frailty to be taken to a hospital, resuscitated in the emergency room and admitted to an ICU. It is difficult for any one person or physician to confront these pressures, to stand back, to honestly explain the situation to the patient and caregivers and to pluck the person off the conveyor belt. Lack of alternatives Most people want to die in their own homes, and yet an increasing number will die in acute care hospitals [14]. Doctors and nurses with palliative care training can provide pain relief, symptom control and psychosocial support in specialised units, hospices or the patient’s home. Yet there remains a paucity of alternative healthcare models for managing EoL transition around the wishes and needs of patients and their caregivers, resulting in many patients being admitted to acute hospitals and ICUs.
Summary The development of ICUs as the final option for seriously ill patients, especially the elderly frail patient at the end of his/her life, has meant that intensivists have increasingly taken on the role of diagnosing the dying [15]. Our society, and even our medical colleagues, do not necessarily understand what we can achieve in ICUs, and even more importantly, what we cannot achieve. The next
crucial step for us as individuals, and through our professional bodies, is to engage our society in discussions on our role and encourage debate and discussion, being aware of the controversies that will inevitably result. Birthing in the 1950s was medicalised without discussion with women and their families. In a similar manner, dying has been medicalised in the twenty-first century [2, 7]. It has not been a conspiracy and the use of futile and
expensive treatment at the EoL transition is not necessarily anyone’s choice. The specialty of intensive care has a particularly important role in facilitating discussions with our society in order to define different ways of managing dying. Conflicts of interest None.
References 1. Lassen HC (1953) A preliminary report 7. Goodwin JS (1999) Geriatrics and the limits of modern medicine. N Engl J on the 1952 epidemic of poliomyelitis Med 340:1283–1285 in Copenhagen with special reference to 8. Hillman K (2010) Dying safely. Int J the treatment of acute respiratory Qual Health Care 22:339–340 insufficiency. Lancet 1:37–41 9. Connors AF Jr, Dawson NV, Thomas C, 2. Clark D (2002) Between hope and Harrell FE Jr, Desbiens N et al (1996) acceptance: the medicalisation of dying. Outcomes following acute exacerbation BMJ 324:905–907 of severe chronic obstructive lung 3. Hoffmann TC, Del Mar C (2015) disease. The SUPPORT investigators Patients’ expectations of the benefits (Study to Understand prognoses and and harms of treatments, screening, and Preferences for Outcomes and Risks of tests: a systematic review. JAMA Intern Treatments). Am J Respir Crit Care Med 175(2):274–286 Med 154:959–967 4. Truog RD (2011) Tolstoy on 10. Sellares J, Ferrer M, Cane F, Loureiro transparency and authority in end-ofH, Valencia M et al (2011) Preditctors life decision-making. Intensive Care of prolonged weaning and survival Med 37:1723–1724 during ventilator weaning in a 5. Lind R, Lorem GF, Nortvedt P, Hevroy respiratory ICU. Intensive Care Med O (2011) Family members’ experience 37:775–784 of ‘‘wait and see’’ as a communication 11. Cardona-Morrell M, Hillman K (2015) strategy in end-of-life decisions. Development of a tool for defining and Intensive Care Med 37:1143–1150 identifying the dying patient in hospital: 6. Soares M, Piva JP (2012) Physicians criteria for screening and triaging to just need to be better trained to provide appropriate alternative care (CriSTAL). the best care at the end-of-life. Intensive BMJ Support Palliat Care 5:78–90. doi: Care Med 38:342–344 10.1136/bmjspcare-2014-000770
12. Gill B, Griffin B, Hesketh B (2013) Changing expectations concerning lifeextending treatment: the relevance of opportunity cost. Soc Sci Med 85:66–73 13. Willmott L, White B, Smith MK, Wilkinson DJ (2014) Withholding and withdrawing life-sustaining treatment in patient’s best interests: Australian judicial deliberations. Med J Aust 201:545–547 14. Moses H 3rd, Matheson DH, Dorsey ER, George BP, Sadoff D et al (2013) The anatomy of health care in the United States. JAMA 310:1947–1963 15. Barnato AE, McClellan MB, Kagay CR, Garber AM (2004) Trends in inpatient treatment intensity among medicare beneficiaries at the end of life. Health Serv Res 39:363–375
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