REVIEWS End-of-life care—what do cancer patients want? Shaheen A. Khan, Barbara Gomes and Irene J. Higginson Abstract | Patients with cancer frequently suffer from debilitating physical symptoms and psychological distress, particularly at the end of life. Interventions to help alleviate these problems are often complex and multifactorial. Palliative care services and therapeutic interventions have developed in a variable manner, often with limited evaluation of clinical effectiveness and affordability, resulting in a relatively weak evidence base. The health care provided to patients with advanced-stage cancer does not always correlate with what is known about their preferences for care. In this Review, we discuss the preferences of patients with cancer regarding their end of life care, including the importance of early provision of palliative care, and the central role of advance care planning in meeting patients’ preferences. It has been shown that many patients with cancer wish to die at home. We discuss the factors that contribute to the place of death, including environmental factors, disease-specific issues, and the availability of resources. There has been a recent upward trend in the number of patients with cancer who die in their preferred place of care, and important contributors—such as community palliative care, advance care planning, and improvements in palliative care services as a result of robust research studies—are considered. Khan, S. A. et al. Nat. Rev. Clin. Oncol. 11, 100–108 (2014); published online 26 November 2013; doi:10.1038/nrclinonc.2013.217
Introduction
Guy’s and St Thomas’ NHS Foundation Trust, Department of Palliative Care, Borough Wing, Great Maze Pond, Guy’s Hospital, London SE1 9RT, UK (S. A. Khan). Cicely Saunders Institute, Bessemer Road, Denmark Hill, London SE5 9PJ, UK (B. Gomes, I. J. Higginson). Correspondence to: S. A. Khan shaheen.khan@ gstt.nhs.uk
Patients diagnosed with cancer frequently suffer from multiple physical symptoms and psychological dis tress, particularly at the end of life.1,2 The aim of palli ative care is to reduce suffering and alleviate distress by focusing on the needs of patients and their carers in a holistic manner. The WHO defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with lifethreatening illness, through 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.”3 It consists of a team approach that involves physicians, nurse specialists and healthcare professionals with expertise in psychological support, spiritual care and physical therapies. Although the precise composition of these teams varies between settings, often dependent on the resources available, the importance of palliative care for patients and carers has been widely recognized. Palliative care was identified as one of the six key priorities to improve the quality of US health care by the National Priorities Partnership.4 Although the need for high-quality palliative and endof-life care is increasing,5 for an ageing and expanding population with increasingly complex healthcare needs, interventional research studies addressing the palliative care needs of patients with cancer can be limited by a number of challenges. These challenges include recruit ment challenges (due in part to the physical and psycho logical issues that potential participants are dealing with), gatekeeping by healthcare staff, attrition, and Competing interests The authors declare no competing interests.
100 | FEBRUARY 2014 | VOLUME 11
the complex nature of multiple interventions and out comes involved in such studies.6 Consequently, palliative care services and therapeutic interventions for patients have been developed in a variable manner, often with limited evaluation and a relatively weak evidence base.7 Despite these challenges, there is robust evidence that the involvement of multidisciplinary palliative care teams improves symptom control, satisfaction and psycho logical support for patients and families in hospitals, hospices and community settings. 8–10 Palliative care interventions lead to measurable reductions in morbid ity and increase the likelihood of patients receiving care in their preferred location.11 Patients who receive palliative care at an early point in the course of their disease seem to experience improve ments in their quality of life. This improvement was observed in a randomized controlled trial in 151 patients with newly diagnosed metastatic non-small-cell lung cancer (NSCLC). 12 Patients were assigned to receive either early palliative care integrated with standard oncological care or standard oncological care alone. Introduction of palliative care early after diagnosis not only improved quality of life and mood, but was also associated with a longer median survival (11.6 months versus 8.9 months, P = 0.02). This difference was observed despite the fact that the group that received early palliative care received less aggressive end-of-life treatment than the group that received only standard care (33% versus 54%). These results indicate that early integration of palliative care for patients with metastatic NSCLC has beneficial effects on quality of life and sur vival, and provides additional benefits to those seen in patients who receive only first-line chemotherapy.
www.nature.com/nrclinonc © 2014 Macmillan Publishers Limited. All rights reserved
REVIEWS Key points ■■ Patients diagnosed with cancer frequently experience multiple burdensome physical symptoms and psychological distress, particularly at the end of their lives ■■ Provision of palliative care for patients with advanced-stage cancer is crucial, and needs to be delivered early and in an integrated manner alongside oncological treatments ■■ Most patients with cancer want to be cared for at home and, if possible, want to die at home ■■ Community palliative care teams improve symptoms and enable patients to be cared for at home ■■ Advance care planning is a cornerstone of effective end-of-life care, and falls within the remit of oncologists, community services and specialist palliative care teams
Box 1 | Factors linked to survival benefit of palliative care in cancer patients 12,13 ■■ Symptom control, leading to improved tolerability of treatment and increased overall survival ■■ Reduction of physical symptoms (pain, nausea, breathlessness) ■■ Reduction of psychological symptoms (anxiety, depression) ■■ Reduction of morbidity and mortality from potentially harmful interventions (as observed in patients with other types of advanced illnesses such as dementia)
Bruera and Yennurajalingam13 considered the poten tial factors that contribute to this apparent survival benefit of palliative care in patients with cancer.13 Using a case presentation, they suggested that the improved symptom control that results from palliative care might lead to improvements in the ability of patients to tolerate cancer treatment regimens, which then translates into an increase in overall survival. Furthermore, uncon trolled symptoms, such as pain, nausea, vomiting and breathlessness, and psychological symptoms, such as anxiety and depression, are linked to increased mortality in patients with cancer,14,15 so reducing such symptoms may in turn reduce mortality. It has also been acknow ledged that provision of palliative care for patients with advanced illness other than cancer, such as dementia, can reduce morbidity and mortality from potentially harmful interventions.16 The factors that may contribute to the survival benefit associated with palliative care in patients with cancer are summarized in Box 1. Palliative care can be delivered effectively in all common health-care settings, including inpatient units, outpatient clinics and home-based services.17 During the evolution of palliative care over the past 20 years, the concept of offering it solely to patients in whom cura tive treatments have been exhausted, has been super seded by an approach that focuses on need rather than prognosis. Kelley and Meier 18 have commented on this shift in palliative care provision. In the past, clinicians have tended to regard palliative care as an alternative to life-prolonging care, but it is now acknowledged that life-threatening illness (irrespective of whether or not it is being treated with curative intent) carries significant burdens of suffering for patients and families that can be effectively addressed by palliative care teams. Although the terms ‘palliative care’ and ‘end-of-life care’ are often used interchangeably,19 the latter is more commonly reserved for patients deemed to be in their last year of life and for whom no curative treatments
are available. The UK General Medical Council defines end-of-life patients as those likely to die within the next 12 months.20 This includes patients whose death is imminent—expected within a few hours or days—and those with gradually progressive incurable conditions, such as advanced-stage cancer. In these situations, clini cians retain a powerful ability to influence the lives of patients and their carers significantly. To ensure that the needs of patients with cancer and their carers are addressed during the end-of-life phase, it is essential to address a key question: when a patient is no longer being treated with curative intent, what do they actually want from their physicians? In this Review, we attempt to address this question and explore how palliative care service development can be used to meet the needs of patients with cancer at the end of their life.
Patients’ end-of-life preferences Studies that investigate the end-of-life preferences of patients with advanced-stage cancer are limited. Borreani et al.21 have developed a specific tool for such studies, the End-of-Life Preferences Interview (ELPI). The first section of the ELPI focuses on preferences about issues related to the caregiving process, and the second section asks about the participants’ preparation for death. Each of these parts is introduced by questions that allow the patient to decide whether and when to stop exploring sensitive topics. In a study carried out to assess the feasibility of this tool, results indicated that discussing end-of-life preferences with patients is possible, but these discussions are more feasible in hospice and home-care settings than in outpatient clinic setting.21 In a study with 88 patients with advanced-stage cancer interviewed using the ELPI method, 77% of participants were willing to talk about what was impor tant to them with regard to their end-of-life care.22 Half of the responders stated a belief in life after death, 40% considered it very important to find meaning at the end of life and 63% stated a preference to die in a state of unconsciousness induced by drugs. This work suggests that tools such as ELPI could be used to help tailor care to a patient’s needs and beliefs. Several factors have been postulated as being of importance to patients and their carers with regard to achieving a ‘good death’ (Box 2). 23–25 Patients with advanced-stage cancer found that the most important factors associated with a ‘good death’ were “to have my pain/symptoms well controlled”, “to not be a burden to my family”, “to have sorted out my personal affairs”, “to be involved in decisions about my care” and “to be mentally alert until death”. Defining a ‘good death’ will be challenging in many situations, and may require a combination of expressed preferences from patients and subsequent correlation with feedback from their bereaved carers. However, the subjective experience of a ‘good death’ for a patient may differ significantly from the experience of their carers,26 and further work is needed to develop and validate integrated tools to capture the experiences of a good death for patients and their carers.
NATURE REVIEWS | CLINICAL ONCOLOGY
VOLUME 11 | FEBRUARY 2014 | 101 © 2014 Macmillan Publishers Limited. All rights reserved
REVIEWS Box 2 | Attributes of a “good death” for patients24–27 ■■ ■■ ■■ ■■ ■■ ■■ ■■ ■■ ■■ ■■ ■■
Being in control and mentally alert until death, involved in decisions about care Being comfortable (pain and other symptoms controlled) Recognition of impending death and a sense of closure Affirmation/value of the self, with beliefs and values honoured Trust in care providers, including a strong patient–physician therapeutic alliance Relationships optimized with family and friends, burden minimized to family Family cared for, including bereavement support Death in preferred place of care Religious prayer or meditation Personal affairs in order Leaving a legacy
Models of the set of factors that have the great est influence on quality of life at the end of life have been developed via the “Coping With Cancer” study,27 a large prospective longitudinal cohort US‑based study of 396 patients with cancer and their informal careg ivers. Factors most positively associated with quality of life during the final week of life were reli gious prayer or meditation, pastoral care, and a strong patient–physician therapeutic alliance. Intensive care unit admission, death in hospital, patient worry, and feeding tube use and administration of chemotherapy in the final week of life were associated with reduced quality of life. Although most of the variability in quality of life in this study was unexplained, the authors used the factors generated to devise health-care strategies that could be used to improve the quality of life of dying patients. These include preventing inappropriate inten sive care admissions, preventing inappropriate use of feeding tubes or chemotherapy, avoiding hospitalization unless necessary, and improving access to pastoral care. The importance of a strong alliance between patients and physicians was also identified as a factor impor tant for quality of life at the end of life. This included patients feeling respected, trusting and respecting their physician, and being comfortable when asking ques tions about their care. These results demonstrate that clinicians who remain actively engaged with their dying patients can improve the quality of the end of life of these individuals. It is important to note that quality of life itself was not measured in this study. Furthermore, much of the data relied on the reports of bereaved caregivers after the death of the patient. The views of patients and their families regarding important factors at the end of life have been studied to inform palliative care service design.28,29 Heyland et al.28 administered a face-to-face questionnaire to patients over 55 years of age with advanced-stage cancer and/or an advanced medical disease (chronic obstructive lung disease, congestive heart failure or liver cirrhosis) and their relatives. A total of 440 patients and 160 relatives participated in the study. The most important factors for quality end-of-life care included trust in the treating physician, avoidance of unwanted life support, effective communication, and continuity of care. The authors also commented on the variation in preferences observed across the participants in the study, highlighting the need for individualized approaches when providing 102 | FEBRUARY 2014 | VOLUME 11
end of life care. It is important to note that studies that investigate the preferences of patients and carers vary depending on the terminology used. Some focus on specific aspects of care, such as symptom control, whereas others focus more on patient’s wishes regarding their spiritual concerns and belief systems. This vari ation makes interpretation of the data challenging, but also reinforces the need for a personalized approach to the provision of end-of-life care that focuses on indivi duals as well as systems. As Dame Cicely Saunders, the founder of the modern palliative care movement, explained: “Palliative care begins from the understand ing that every patient has his or her own story, relation ships and culture, and is worthy of respect as a unique individual. This respect includes giving the best avail able medical care and making the advances of recent decades fully available, so that all have the best chance of using their time well.”30 It is also important to consider the importance of providing care for the ‘family unit’, that is, the patients and all those who are important to them. Patients with advanced-stage cancer should be considered in the context of their social situation and support network. This is of particular importance for patients at the end of life, and is likely to involve various members of the multidisciplinary palliative care team. In a study of 65 patients with terminal cancer, questionnaire inter views were used to investigate the needs and problems of patients and their family members.31 Both groups of particip ants stated that the two most serious prob lems were the effect of anxiety on the main carer and symptom control for the patient.31 Physicians with the requisite clinical and communication skills are often well-placed to deal with both of these issues.
The importance of place of death Most people (including healthy people as well as patients with cancer) would prefer to be cared for at home and die at home.31–35 In a systematic review of 210 studies looking at preferences for home death, covering responses from just over 100,000 people—including patients, caregivers and members of the general public— from 34 countries, 36 75% of the studies showed that most people prefer to die at home. Among high-quality studies and excluding outliers, a preference for dying at home ranged from 31% to 87% for patients and from 25% to 64% for caregivers. Across 10 studies that measured preferences over time, only a fifth of respon dents changed their stated preference, suggesting that these preferences remain fairly stable and consistent even as a patient’s disease progresses. A telephone survey conducted in Europe involving a random sample of participants aged over 16 years across England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain recently demonstrated that most people state a preference to die at home in the event that they developed a serious illness, such as advancedstage cancer.37 Of 9,344 participants, between 51% (95% CI 48–54%) in Portugal and 84% (95% CI 82–86%) in the Netherlands would prefer to die at home. Factors
www.nature.com/nrclinonc © 2014 Macmillan Publishers Limited. All rights reserved
REVIEWS associated with a preference for home death included: younger age up to 70 years (Germany, the Netherlands, Portugal, Spain), prioritizing keeping a positive atti tude (Germany, Spain) and wanting to involve family in decisions if incapable (Flanders, Portugal).37 This data suggests that location of death is an important factor to consider when dealing with the end-of-life care preferences of patients with cancer. At least two-thirds of people across all countries studied in the European telephone survey,37 except Portugal, stated a preference for home death. In Portugal, 51% of participants expressed a preference for home death, and the authors proposed that this may reflect con cerns with the limited availability of home care in this country. Other potential contributing factors included poorer economic circumstances and a culture with strong traditional values, such as the importance of religion and respect for authority. By contrast, the relatively high preference for home death expressed by participants in the Netherlands may reflect better avail ability of home care, good economic conditions and a culture in which secular-rational and self-expression values are prominent. This is supported by the relatively high number of home deaths (45.4%) for patients with cancer in the Netherlands.38 Further work is needed across intern ational boundaries to determine how place of death is influenced by health policy, the stages of development of palliative care, access to specialised interventions at home such as parenteral feeding, and cultural beliefs. Despite the evidence that most patients with advanced-stage cancer state a preference to die at home, trends towards increased deaths in institutions, rather than at home, have been reported in many regions of the developed world, with projections warning about the potential cost implications for care if these trends persist.5,39–42 Increasing the proportion of patients that are able to remain at home in their last months, weeks and days of life, rather than being admitted to hospi tal, confers significant economic benefits.43 In view of the data supporting patient and carer preferences for home death and the potential economic benefits, national policies—such as the USA hospice benefit pro gramme, 44 and the UK End of Life Care strategy 45— are seeking to increase the proportion of deaths that occur at home by increasing the provision of specialist palliative care and supporting education and training of non-specialists. The number of home deaths have been rising for several years in north America,44,46,47 and a time series analysis of all deaths in England and Wales from 2004 to 2010 (3,525,564 decedents) demon strated an increase in the proportion of deaths at home, from 18.3% in 2004 to 20.8% in 2010. 48 The rise in home deaths was more pronounced in patients with cancer, suggesting specific improvements in oncology and palliative care services for these patients. It is not known if the national policies are directly linked to the increasing proportion of deaths occurring at home, and more work is needed to ascertain the cost effectiveness of such interventions.
Factors contributing to place of death It is vital to understand the factors associated with place of death to enable development of effective palliative care strategies and optimize end-of-life care. A study 49 analysing all cancer deaths in England collected by the Office for National Statistics during 1993–2010 (n = 2,281,223) found that the number of home and hospice deaths have increased since 2005, (0.87%; 95% CI 0.74–0.99 and 0.24%; 95% CI 0.17–0.32, per year respectively, P
Introduction
Guy’s and St Thomas’ NHS Foundation Trust, Department of Palliative Care, Borough Wing, Great Maze Pond, Guy’s Hospital, London SE1 9RT, UK (S. A. Khan). Cicely Saunders Institute, Bessemer Road, Denmark Hill, London SE5 9PJ, UK (B. Gomes, I. J. Higginson). Correspondence to: S. A. Khan shaheen.khan@ gstt.nhs.uk
Patients diagnosed with cancer frequently suffer from multiple physical symptoms and psychological dis tress, particularly at the end of life.1,2 The aim of palli ative care is to reduce suffering and alleviate distress by focusing on the needs of patients and their carers in a holistic manner. The WHO defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with lifethreatening illness, through 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.”3 It consists of a team approach that involves physicians, nurse specialists and healthcare professionals with expertise in psychological support, spiritual care and physical therapies. Although the precise composition of these teams varies between settings, often dependent on the resources available, the importance of palliative care for patients and carers has been widely recognized. Palliative care was identified as one of the six key priorities to improve the quality of US health care by the National Priorities Partnership.4 Although the need for high-quality palliative and endof-life care is increasing,5 for an ageing and expanding population with increasingly complex healthcare needs, interventional research studies addressing the palliative care needs of patients with cancer can be limited by a number of challenges. These challenges include recruit ment challenges (due in part to the physical and psycho logical issues that potential participants are dealing with), gatekeeping by healthcare staff, attrition, and Competing interests The authors declare no competing interests.
100 | FEBRUARY 2014 | VOLUME 11
the complex nature of multiple interventions and out comes involved in such studies.6 Consequently, palliative care services and therapeutic interventions for patients have been developed in a variable manner, often with limited evaluation and a relatively weak evidence base.7 Despite these challenges, there is robust evidence that the involvement of multidisciplinary palliative care teams improves symptom control, satisfaction and psycho logical support for patients and families in hospitals, hospices and community settings. 8–10 Palliative care interventions lead to measurable reductions in morbid ity and increase the likelihood of patients receiving care in their preferred location.11 Patients who receive palliative care at an early point in the course of their disease seem to experience improve ments in their quality of life. This improvement was observed in a randomized controlled trial in 151 patients with newly diagnosed metastatic non-small-cell lung cancer (NSCLC). 12 Patients were assigned to receive either early palliative care integrated with standard oncological care or standard oncological care alone. Introduction of palliative care early after diagnosis not only improved quality of life and mood, but was also associated with a longer median survival (11.6 months versus 8.9 months, P = 0.02). This difference was observed despite the fact that the group that received early palliative care received less aggressive end-of-life treatment than the group that received only standard care (33% versus 54%). These results indicate that early integration of palliative care for patients with metastatic NSCLC has beneficial effects on quality of life and sur vival, and provides additional benefits to those seen in patients who receive only first-line chemotherapy.
www.nature.com/nrclinonc © 2014 Macmillan Publishers Limited. All rights reserved
REVIEWS Key points ■■ Patients diagnosed with cancer frequently experience multiple burdensome physical symptoms and psychological distress, particularly at the end of their lives ■■ Provision of palliative care for patients with advanced-stage cancer is crucial, and needs to be delivered early and in an integrated manner alongside oncological treatments ■■ Most patients with cancer want to be cared for at home and, if possible, want to die at home ■■ Community palliative care teams improve symptoms and enable patients to be cared for at home ■■ Advance care planning is a cornerstone of effective end-of-life care, and falls within the remit of oncologists, community services and specialist palliative care teams
Box 1 | Factors linked to survival benefit of palliative care in cancer patients 12,13 ■■ Symptom control, leading to improved tolerability of treatment and increased overall survival ■■ Reduction of physical symptoms (pain, nausea, breathlessness) ■■ Reduction of psychological symptoms (anxiety, depression) ■■ Reduction of morbidity and mortality from potentially harmful interventions (as observed in patients with other types of advanced illnesses such as dementia)
Bruera and Yennurajalingam13 considered the poten tial factors that contribute to this apparent survival benefit of palliative care in patients with cancer.13 Using a case presentation, they suggested that the improved symptom control that results from palliative care might lead to improvements in the ability of patients to tolerate cancer treatment regimens, which then translates into an increase in overall survival. Furthermore, uncon trolled symptoms, such as pain, nausea, vomiting and breathlessness, and psychological symptoms, such as anxiety and depression, are linked to increased mortality in patients with cancer,14,15 so reducing such symptoms may in turn reduce mortality. It has also been acknow ledged that provision of palliative care for patients with advanced illness other than cancer, such as dementia, can reduce morbidity and mortality from potentially harmful interventions.16 The factors that may contribute to the survival benefit associated with palliative care in patients with cancer are summarized in Box 1. Palliative care can be delivered effectively in all common health-care settings, including inpatient units, outpatient clinics and home-based services.17 During the evolution of palliative care over the past 20 years, the concept of offering it solely to patients in whom cura tive treatments have been exhausted, has been super seded by an approach that focuses on need rather than prognosis. Kelley and Meier 18 have commented on this shift in palliative care provision. In the past, clinicians have tended to regard palliative care as an alternative to life-prolonging care, but it is now acknowledged that life-threatening illness (irrespective of whether or not it is being treated with curative intent) carries significant burdens of suffering for patients and families that can be effectively addressed by palliative care teams. Although the terms ‘palliative care’ and ‘end-of-life care’ are often used interchangeably,19 the latter is more commonly reserved for patients deemed to be in their last year of life and for whom no curative treatments
are available. The UK General Medical Council defines end-of-life patients as those likely to die within the next 12 months.20 This includes patients whose death is imminent—expected within a few hours or days—and those with gradually progressive incurable conditions, such as advanced-stage cancer. In these situations, clini cians retain a powerful ability to influence the lives of patients and their carers significantly. To ensure that the needs of patients with cancer and their carers are addressed during the end-of-life phase, it is essential to address a key question: when a patient is no longer being treated with curative intent, what do they actually want from their physicians? In this Review, we attempt to address this question and explore how palliative care service development can be used to meet the needs of patients with cancer at the end of their life.
Patients’ end-of-life preferences Studies that investigate the end-of-life preferences of patients with advanced-stage cancer are limited. Borreani et al.21 have developed a specific tool for such studies, the End-of-Life Preferences Interview (ELPI). The first section of the ELPI focuses on preferences about issues related to the caregiving process, and the second section asks about the participants’ preparation for death. Each of these parts is introduced by questions that allow the patient to decide whether and when to stop exploring sensitive topics. In a study carried out to assess the feasibility of this tool, results indicated that discussing end-of-life preferences with patients is possible, but these discussions are more feasible in hospice and home-care settings than in outpatient clinic setting.21 In a study with 88 patients with advanced-stage cancer interviewed using the ELPI method, 77% of participants were willing to talk about what was impor tant to them with regard to their end-of-life care.22 Half of the responders stated a belief in life after death, 40% considered it very important to find meaning at the end of life and 63% stated a preference to die in a state of unconsciousness induced by drugs. This work suggests that tools such as ELPI could be used to help tailor care to a patient’s needs and beliefs. Several factors have been postulated as being of importance to patients and their carers with regard to achieving a ‘good death’ (Box 2). 23–25 Patients with advanced-stage cancer found that the most important factors associated with a ‘good death’ were “to have my pain/symptoms well controlled”, “to not be a burden to my family”, “to have sorted out my personal affairs”, “to be involved in decisions about my care” and “to be mentally alert until death”. Defining a ‘good death’ will be challenging in many situations, and may require a combination of expressed preferences from patients and subsequent correlation with feedback from their bereaved carers. However, the subjective experience of a ‘good death’ for a patient may differ significantly from the experience of their carers,26 and further work is needed to develop and validate integrated tools to capture the experiences of a good death for patients and their carers.
NATURE REVIEWS | CLINICAL ONCOLOGY
VOLUME 11 | FEBRUARY 2014 | 101 © 2014 Macmillan Publishers Limited. All rights reserved
REVIEWS Box 2 | Attributes of a “good death” for patients24–27 ■■ ■■ ■■ ■■ ■■ ■■ ■■ ■■ ■■ ■■ ■■
Being in control and mentally alert until death, involved in decisions about care Being comfortable (pain and other symptoms controlled) Recognition of impending death and a sense of closure Affirmation/value of the self, with beliefs and values honoured Trust in care providers, including a strong patient–physician therapeutic alliance Relationships optimized with family and friends, burden minimized to family Family cared for, including bereavement support Death in preferred place of care Religious prayer or meditation Personal affairs in order Leaving a legacy
Models of the set of factors that have the great est influence on quality of life at the end of life have been developed via the “Coping With Cancer” study,27 a large prospective longitudinal cohort US‑based study of 396 patients with cancer and their informal careg ivers. Factors most positively associated with quality of life during the final week of life were reli gious prayer or meditation, pastoral care, and a strong patient–physician therapeutic alliance. Intensive care unit admission, death in hospital, patient worry, and feeding tube use and administration of chemotherapy in the final week of life were associated with reduced quality of life. Although most of the variability in quality of life in this study was unexplained, the authors used the factors generated to devise health-care strategies that could be used to improve the quality of life of dying patients. These include preventing inappropriate inten sive care admissions, preventing inappropriate use of feeding tubes or chemotherapy, avoiding hospitalization unless necessary, and improving access to pastoral care. The importance of a strong alliance between patients and physicians was also identified as a factor impor tant for quality of life at the end of life. This included patients feeling respected, trusting and respecting their physician, and being comfortable when asking ques tions about their care. These results demonstrate that clinicians who remain actively engaged with their dying patients can improve the quality of the end of life of these individuals. It is important to note that quality of life itself was not measured in this study. Furthermore, much of the data relied on the reports of bereaved caregivers after the death of the patient. The views of patients and their families regarding important factors at the end of life have been studied to inform palliative care service design.28,29 Heyland et al.28 administered a face-to-face questionnaire to patients over 55 years of age with advanced-stage cancer and/or an advanced medical disease (chronic obstructive lung disease, congestive heart failure or liver cirrhosis) and their relatives. A total of 440 patients and 160 relatives participated in the study. The most important factors for quality end-of-life care included trust in the treating physician, avoidance of unwanted life support, effective communication, and continuity of care. The authors also commented on the variation in preferences observed across the participants in the study, highlighting the need for individualized approaches when providing 102 | FEBRUARY 2014 | VOLUME 11
end of life care. It is important to note that studies that investigate the preferences of patients and carers vary depending on the terminology used. Some focus on specific aspects of care, such as symptom control, whereas others focus more on patient’s wishes regarding their spiritual concerns and belief systems. This vari ation makes interpretation of the data challenging, but also reinforces the need for a personalized approach to the provision of end-of-life care that focuses on indivi duals as well as systems. As Dame Cicely Saunders, the founder of the modern palliative care movement, explained: “Palliative care begins from the understand ing that every patient has his or her own story, relation ships and culture, and is worthy of respect as a unique individual. This respect includes giving the best avail able medical care and making the advances of recent decades fully available, so that all have the best chance of using their time well.”30 It is also important to consider the importance of providing care for the ‘family unit’, that is, the patients and all those who are important to them. Patients with advanced-stage cancer should be considered in the context of their social situation and support network. This is of particular importance for patients at the end of life, and is likely to involve various members of the multidisciplinary palliative care team. In a study of 65 patients with terminal cancer, questionnaire inter views were used to investigate the needs and problems of patients and their family members.31 Both groups of particip ants stated that the two most serious prob lems were the effect of anxiety on the main carer and symptom control for the patient.31 Physicians with the requisite clinical and communication skills are often well-placed to deal with both of these issues.
The importance of place of death Most people (including healthy people as well as patients with cancer) would prefer to be cared for at home and die at home.31–35 In a systematic review of 210 studies looking at preferences for home death, covering responses from just over 100,000 people—including patients, caregivers and members of the general public— from 34 countries, 36 75% of the studies showed that most people prefer to die at home. Among high-quality studies and excluding outliers, a preference for dying at home ranged from 31% to 87% for patients and from 25% to 64% for caregivers. Across 10 studies that measured preferences over time, only a fifth of respon dents changed their stated preference, suggesting that these preferences remain fairly stable and consistent even as a patient’s disease progresses. A telephone survey conducted in Europe involving a random sample of participants aged over 16 years across England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain recently demonstrated that most people state a preference to die at home in the event that they developed a serious illness, such as advancedstage cancer.37 Of 9,344 participants, between 51% (95% CI 48–54%) in Portugal and 84% (95% CI 82–86%) in the Netherlands would prefer to die at home. Factors
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REVIEWS associated with a preference for home death included: younger age up to 70 years (Germany, the Netherlands, Portugal, Spain), prioritizing keeping a positive atti tude (Germany, Spain) and wanting to involve family in decisions if incapable (Flanders, Portugal).37 This data suggests that location of death is an important factor to consider when dealing with the end-of-life care preferences of patients with cancer. At least two-thirds of people across all countries studied in the European telephone survey,37 except Portugal, stated a preference for home death. In Portugal, 51% of participants expressed a preference for home death, and the authors proposed that this may reflect con cerns with the limited availability of home care in this country. Other potential contributing factors included poorer economic circumstances and a culture with strong traditional values, such as the importance of religion and respect for authority. By contrast, the relatively high preference for home death expressed by participants in the Netherlands may reflect better avail ability of home care, good economic conditions and a culture in which secular-rational and self-expression values are prominent. This is supported by the relatively high number of home deaths (45.4%) for patients with cancer in the Netherlands.38 Further work is needed across intern ational boundaries to determine how place of death is influenced by health policy, the stages of development of palliative care, access to specialised interventions at home such as parenteral feeding, and cultural beliefs. Despite the evidence that most patients with advanced-stage cancer state a preference to die at home, trends towards increased deaths in institutions, rather than at home, have been reported in many regions of the developed world, with projections warning about the potential cost implications for care if these trends persist.5,39–42 Increasing the proportion of patients that are able to remain at home in their last months, weeks and days of life, rather than being admitted to hospi tal, confers significant economic benefits.43 In view of the data supporting patient and carer preferences for home death and the potential economic benefits, national policies—such as the USA hospice benefit pro gramme, 44 and the UK End of Life Care strategy 45— are seeking to increase the proportion of deaths that occur at home by increasing the provision of specialist palliative care and supporting education and training of non-specialists. The number of home deaths have been rising for several years in north America,44,46,47 and a time series analysis of all deaths in England and Wales from 2004 to 2010 (3,525,564 decedents) demon strated an increase in the proportion of deaths at home, from 18.3% in 2004 to 20.8% in 2010. 48 The rise in home deaths was more pronounced in patients with cancer, suggesting specific improvements in oncology and palliative care services for these patients. It is not known if the national policies are directly linked to the increasing proportion of deaths occurring at home, and more work is needed to ascertain the cost effectiveness of such interventions.
Factors contributing to place of death It is vital to understand the factors associated with place of death to enable development of effective palliative care strategies and optimize end-of-life care. A study 49 analysing all cancer deaths in England collected by the Office for National Statistics during 1993–2010 (n = 2,281,223) found that the number of home and hospice deaths have increased since 2005, (0.87%; 95% CI 0.74–0.99 and 0.24%; 95% CI 0.17–0.32, per year respectively, P
