- Email: [email protected]
Malignant mesothelioma: current practice and research directions
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Malignant mesothelioma: current practice and research directions Rhonda Hawley, Amy Monk, The University of Sydney
Abstract Malignant mesothelioma is an aggressive and fatal tumour of the mesothelial cells in the pleural cavity and peritoneum. It is significantly related to past exposure to asbestos. The number of people presenting with this disease is steadily increasing and is expected to continue to rise for at least the next 20 years. Current treatment has had little impact on morbidity and mortality rates whilst new treatment regimes are currently at the clinical trial stage. Research related to malignant mesothelioma is focused on the biomedical aspects of the disease, with no research on the unique end of life issues for this population. Anecdotal evidence from the Workers’ Compensation Dust Diseases Board (DDB) suggests that many patients with mesothelioma express the wish to die at home, yet they are often admitted into hospital in the days leading up to death and do not return home. The aims of this review were to explore the reasons why patients are admitted to hospital, to identify strategies that may support end of life care in the home and to identify directions for future research. Keywords: mesothelioma, palliative care, home care, hospitalisation, caregivers
Acknowledgements We would like to thank Professor Lindsay Gething, Louise Cahill, Judith Fethney and Jennifer King for their feedback on earlier drafts of this paper.
Rhonda Hawley PhD MEd BA DNE RN RMN CardioTthoracicCert, Director, Research Centre for Adaptation in Health and Illness, The University of Sydney Amy Monk, RN, BN (Hons) Research Assistant, Research Centre for Adaptation in Health and Illness, The University of Sydney. Email: [email protected]
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Introduction Malignant mesothelioma is an aggressive and invariably fatal tumour of the mesothelial cells in the pleural cavity and peritoneum (Munson 1997, Leigh et al 2002). Australia has the highest incidence of malignant mesothelioma in the world. This is a result of high per capita mining and extensive use of asbestos during the 1950s (Takahashi et al 1999, Leigh et al 2002). The number of malignant mesothelioma presentations per year increased by 440 % between 1985 and 1995 (Johnson et al 1995). Some 450 to 600 new cases are reported annually Australia-wide and this number is expected to increase nearly threefold by 2020 (Leigh et al 2002). The number of new presentations of mesothelioma is similar to those of uterine cancer in females (n=465) and bladder cancer in males (n=583), indicating that mesothelioma is no longer considered a rare cancer (Leigh et al 2002, Tracey & Supramaniam 2002). The rising incidence of malignant mesothelioma has substantial economic ramifications from a public health standpoint, as the number of people seeking compensation from government bodies such as The Workers’ Compensation Dust Diseases Board (DDB) of New South Wales is expected to rise (Leigh et al 2002). The predicted peak in the incidence of mesothelioma in Australia will be around the year 2010 (Johnson et al 1995). The incidence of mesothelioma has a significant positive relationship with past exposure to asbestos (Takahashi et al 1999, Leigh et al 2002). Besides miners, many secondary workers such as ship builders, insulation workers, fitters, carpenters and electricians were exposed to asbestos prior to the 1980s when strict codes of practice and handling procedures were introduced (Johnson et al 1995, Barak et al 1998, Takahashi et al 1999, Marsh et al 2001, National Occupational Health and Safety Commission 2001, Leigh et al 2002). Mesothelioma has a long latency period, whereby the time between initial exposure and diagnosis is between 32 and 53 years (Johnson et al 1995). The carcinogenic effects of asbestos have been attributed to the thin, long and needle-like shape of asbestos fibres (Langer & Pooley 1973). Once these fibres present in the upper airways they can penetrate deep inside the visceral pleura where an inflammatory and fibrotic reaction occurs. This process is thought to contribute to development of the tumour (Langer & Pooley 1973, Rom et al 1991, Aisner 1995). The onset of the disease is insidious and symptoms are non-specific for some time (Munson 1997). People often delay seeking medical
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Malignant mesothelioma: current practice and research directions
advice regarding these symptoms, permitting the tumour to grow considerably, and consequently treatment options are limited (Munson 1997). When people do present, their symptoms include dyspnoea, pain, weight loss and fatigue (Johnson et al 1995). As the disease progresses, the tumour grows relentlessly and invades nerves and other structures such as the chest wall, diaphragm and the peritoneum (Connelly et al 1987, Aisner 1995). From the time of diagnosis the median survival rate is only 280 days (Johnson et al 1995). Management options: hope for a cure A number of trials have been conducted on chemotherapeutic agents and surgical procedures as treatments for malignant mesothelioma, however these have had little effect on patient outcomes (Bissett et al 1991, Aisner 1995, Ong & Vogelzang 1996, Ryan et al 1998, de Graaf-Strukowska et al 1999, Chin et al 2002). Currently, radiation therapy is used for palliation of local pain and for symptomatic improvements, yet its effect on long term survival and disease control has been found to be insignificant (Bissett et al 1991, Aisner 1995, de Graaf-Strukowska et al 1999, Chin et al 2002). Trials that have implemented different combinations of surgery, chemotherapy and radiation therapy have been more successful in improving median survival rates than those that have used only one type of intervention (Rusch et al 1994, Sugarbaker et al 1996, Zellos & Sugarbaker 2002). Surgical procedures, such as pleurectomy and extrapleural pneumonectomy, when used in conjunction with chemotherapy and radiation therapy, have been shown to prolong the lives of those diagnosed in the early stages of the disease, especially when the tumour is confined to the pleural space (Sugarbaker et al 1996, Zellos & Sugarbaker 2002). However, these types of interventions may increase the burden of symptoms in those who are older and have pre-existing co-morbidities (Smythe 2002). New therapies and approaches that use combinations of antifolates and chemotherapy agents such as cisplatin are producing positive results. Antifolates are drugs that target the folic acid metabolic path and are shown to be the most effective compounds on malignant mesothelioma cells. These regimes are currently at the clinical trial stage (Aisner 1995, Fizazi et al 2002, Smythe 2002, Steele 2003). New biological treatments, chemotherapy agents and surgical procedures for patients with malignant mesothelioma are focused on biomedical outcomes such as tumour suppression and disease-free states but the long term benefits are unknown. While these management strategies can also relieve symptoms and prolong survival times their results infrequently meet the expectations or hopes of patients and their carers. Research into other aspects of caring for people with mesothelioma when a cure is not possible, such as end of life care, has not kept abreast of these medical advances. End of life care: a wish to die at home The DDB have regular contact with approximately two thirds of people within New South Wales who have mesothelioma (Johnson 2000). This organisation provides monetary compensation, hospital type equipment and other services, such as counselling, to people with mesothelioma deemed as eligible under the Workers’ Compen-
sation (Dust Diseases) Act, 1942 (Johnson 2000). The DDB have provided anecdotal evidence suggesting that besides a hope for a cure, one of the main issues for people with mesothelioma is the location of their end of life care and subsequent death. They identified that although many clients express the wish to die at home, they are often admitted into hospital in the days leading up to death and do not return home (personal communication DDB). As there is no research that identifies the dynamics of this process among people with mesothelioma, we explored the literature to identify reasons why people may die in hospital despite their original intent to stay at home. The outcome of this review provides recommendations for practice and directions for further research. Expressing the need to receive end of life care at home for people with a terminal illness is well documented in the literature. According to Ratner et al (2001) and supported by others (Townsend et al 1990, Hinton 1994, Gilbar & Steiner 1996, Evans & Walsh 2002) between 82% and 89% of patients and carers expressed a wish for care and the death to occur in this environment. The reasons given for this preference included: the ability of the dying person to have some sense of control or influence over their care; to strengthen family relationships; to feel needed in the home; to receive psychological and emotional comfort from the family, and to be able to face death with loved ones (Ratner et al 2001, Evans & Walsh 2002). From a health care service standpoint, home deaths are also less expensive than hospital deaths and they ease the burden on the increasing shortage of hospice, palliative care and acute hospital beds available for terminally ill patients (Gilbar & Steiner 1996). Despite the many benefits related to dying at home there appears a large gap between where a person wishes to die and where they actually die. A study by Townsend et al (1990) reported that of the 70% of terminally ill patients who expressed a wish to die at home only 30% of these people actually died there. According to Evans and Walsh (2002) the incidence of home death for patients with a terminal illness has shown a steady decline for sometime. In 1965 the rate of home deaths for cancer patients was 37%, and in 1987 and 1994 the rates had dropped to 27% and 22% respectively (Evans & Walsh 2002). This trend seems to suggest that during end of life care in the home, situations arise that would be best managed in a more appropriate care setting (Fainsinger et al 2000). The literature suggests disease progression and burden of care on the family are the two most likely factors that will influence end of life decisions and change the preference from a home to a hospital death for people with mesothelioma and their carers. Disease progression For patients with advanced lung cancer, and in this case mesothelioma, the reality of rapid progression of the disease, increasing physical symptoms, decreasing functional ability and lower quality of life, presents enormous challenges for the individual and his/her carers (ACN Working Party on the Management of Lung Cancer 2002). In particular, patients with mesothelioma experience more symptoms such as dyspnoea, pain, anorexia, fatigue and cough compared with people who have a range of other cancers such as breast cancer and colon cancer (Cooley 2000). The level of distress (fear, anxiety and
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panic) related to dyspnoea is also higher in those with lung cancer (Cooley 2000). The two symptoms most likely to lead to a hospital admission for people with mesothelioma are dyspnoea and pain. Dyspnoea is experienced by 70% of people with lung cancer and in mesothelioma it is generally related to recurrent malignant pleural effusion (Krech et al 1992, Vainio & Auvinen 1996). Admission to hospital may then be required for thoracentesis and in some cases patients may require chemical pleurodesis (Krech et al 1992, Vainio & Auvinen 1996). In the early stages of the disease these procedures may relieve the dyspnoea and the patient can return home. It may however not always be possible to control the dyspnoea completely and patients remain hospitalised until death occurs. Like dyspnoea, pain is also experienced by the vast majority (86%) of patients with mesothelioma and may be difficult to manage at home especially if the patient is experiencing breakthrough pain severe uncontrolled pain (Krech et al 1992). Although Cartwright (1991) found that 87% of nurses thought it was possible to control pain for most people dying at home, over one third of these nurses reported that in reality it was not actually managed well. One reason cited was lack of knowledge about appropriate analgesia which presented problems for both nurses and general practioners when they needed to determine the type and dose of analgesic to administer. The other reason was related to inadequate communication between patients and health care professionals resulting in the frequency and severity of pain being poorly assessed. Admission to hospital may be required for appropriate pain assessment, for review of medications or for intravenous analgesics to provide rapid control of moderate to severe pain (Krech et al 1992, Vainio & Auvinen 1996). Burden of care The second reason why the location of death may change from the home to hospital is the burden of care on the family. Currently most patients with mesothelioma are over 65 years of age and the primary responsibility for home care falls on the family, especially the spouse (Fainsinger et al 2000, Johnson 2000). Patients in this age bracket are more likely to have a spouse over 60 years of age (Gilbar & Steiner 1996). While the physical, psychological and emotional resources required to provide home care may be adequate in the early stages of the disease, when the disease progresses rapidly and the condition of the patient deteriorates these resources may become depleted, resulting in a hospital admission (Jones et al 1993, Gilbar & Steiner 1996). A retrospective medical chart audit (n=191) conducted by Gilbar and Steiner (1996) demonstrated that one of the variables influencing the place of death was the patient’s age. This study found that patients aged 50-59 and who had a younger spouse were more likely to die in the place of their choice as economic, psychological and emotional resources were adequate to manage prolonged care at home. On the other hand patients over 60 years of age were more likely to die in a hospital setting as their spouse was older, family income was likely to be lower and extended family members were more likely to have their own commitments, resulting in consistent help not always being available over prolonged periods. In addition, friends and neighbours could offer little support, as they were generally older themselves. 24
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Dying in hospital The family providing the care for a terminally ill patient may need respite care for a number of reasons such as when the carer becomes over anxious about managing worsening symptoms and begins to lose weight and suffer from insomia or carer burnout. In these situations admission to an acute hospital may be the only option available. A study by Fried et al (1999) revealed 48% (n=118) of terminally ill patients preferred their palliative care to be carried out in hospital, because they felt hospitals had the resources and staffing levels to provide the care required. Hinton (1994) reported family caregivers were satisfied when their relatives died in hospital because of the difficulties related to caring for and managing the symptoms of a terminally ill person during their last days. An earlier study conducted by Townsend et al (1990) found there were some carers of people who died at home who thought the patient would have received better care in hospital. Hospital deaths can also have negative ramifications particularly when they occur in acute, rather than palliative, care settings. People with a terminal illness are often admitted to these acute areas within hospitals such as accident and emergency, medicalsurgical wards or intensive care units where they receive treatment outside the realm of palliative care (Prior & Poulton 1996, Fainsinger et al 2000). For example, a large prospective study by Lynn et al (1997) found 56% (n=1880) of the patients in five major teaching hospitals received at least one life-sustaining treatment during the three days before death, including resuscitation, ventilation and feeding tubes. Clark (2002) also found 47% of elderly patients with advanced cancer or dementia received invasive non-palliative treatments during their final few days. Other people have also expressed dissatisfaction with hospital care when compared to home care due to difficulty in accessing transport to and from hospital, lack of support from hospital staff and problems associated with busy and noisy wards (Fakhoury et al 1996). Townsend et al (1990) reported acute hospitals lack facilities that allow families to visit and spend time with dying relatives. These facilities included access to overnight accommodation close to the patient and access to meals and refreshments. In addition, an Australian study (McGrath 2001) using qualitative in-depth interviews, found hospital staff did not always respect the desire for carers to be with their dying relative. While there may be some disadvantages of dying in hospital these can be overcome by nurses and doctors paying particular attention not only to symptom control but also to the emotional and psychological support required by the patient and family. Admission to hospital especially during the last days of life needs to be seen not only as a positive and an appropriate indicator of end of life care but also as part of the continuum of care. An important component of this continuum of care is agreement on the goals of care between hospital and community staff, the patient and the family. When these have been established death can occur peacefully even in the hospital setting (Fried et al 1999).
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Recommendations for practice and directions for further research To plan future services for patients with mesothelioma and their carers, planners and providers of health care need to be aware of possible strategies to lessen the gap between where a patient wishes to die and where they actually die. A consensus exists in the literature regarding three main strategies. The first is a need for early referral to a specialist palliative care team. Although these services are well established there is evidence to suggest the majority of cancer patients receive limited or no palliative care (Fakhoury et al 1996, Evans & Walsh 2002). According to the ACN Working Party on the Management of Lung Cancer (2002) involvement of a palliative care team not only facilitates continuity of care between the hospital and community but also provides grief and bereavement support for carers during the illness experience and following the death. Other advantages of palliative care include 24-hour telephone contact, increased patient and carer satisfaction, an overall reduction in the cost of care, reduced time spent in hospital and increased time spent at home by the patient (ACN Working Party on the Management of Lung Cancer 2002). A second strategy that would allow patients to die in a place of their choice would be the provision of adequate community support including nursing care and other support services (Cartwright 1991, Fakhoury et al 1996). According to both Fakhoury et al (1996) and Field and McGaughey (1998), community nurses are central to palliative care provided in the home as they are the most frequent and constant source of help to patients and their family carers. While patients and relatives reported high levels of satisfaction with medical care, overall they were factors such as the time community nurses spent with the dying patient, their ability to coordinate care and their ability to coordinate other services provided to the dying patient that were more likely to increase satisfaction levels with home care (Fakhoury et al 1996, Field & McGaughey 1998). Further, increasing the number of visits by a nurse allows the opportunity for a strong trusting relationship to develop with the patient and his/her carer. Once this relationship has been established the nurse can provide the emotional and psychosocial support that are integral to successful caring (Fakhoury et al 1996). Field and McGaughey (1998) in particular asserted that in their study, many patients (66 %) admitted to hospital did not require 24hour nursing care. Seale et al (1997) suggested if regular visits were made by community nurses and information was provided on services such as home help, financial support and other allied health services the number of home deaths would increase from 29% to 44% for those patients who had indicated home as the preferred place to die. Allocating sufficient resources to allow community nurses to make regular visits to terminally ill patients at home and providing other support services would appear to be a cost-effective alternative to hospitalisation. This strategy would also improve the quality of life for both patients and families. The final strategy to support families and increase the number of home deaths where appropriate is the provision of education to family carers regarding preparation for end of life care. A study conducted by Steinhauser et al (2001) using both focus groups
(n=12) and a national survey (n=1462) affirmed the importance of the family understanding that there are dual tasks involved in home based palliative care in that there is a need to help prepare the patient as well as themselves for the patient’s death. Part of this preparation process involves health care professionals providing information on what to expect about the physical condition of the patient. Having sufficient warning about the physical decline of the patient also gives the family time to put their financial affairs in order, to resolve unfinished business, to talk with close friends and to remember personal achievements. Focusing on these aspects enables the family to gain a sense of completeness and closure, as issues can be resolved prior to the death. Another part of this process is educating the family on how to manage the changes that accompany physical decline such as dyspnoea, pain, nausea and constipation. Opioids such as morphine are the drugs of choice both for the symptomatic relief of dyspnoea and for moderate to severe pain. Intermittent dosing can be adequate if dyspnoea and pain are not continuous but this needs to change to regular doses if both or either symptoms persist (Bruera et al 1990, Boyd & Kelly 1997). The basis of the action of morphine is its sedative effect on the respiratory centre and its central effect on pain receptors (Meek & Schwartz 1999). While morphine can be used safely to manage dyspnoea and cancer pain without fear of tolerance or addiction the side effects of nausea and constipation can be troublesome. When morphine is used anti-emetics and regular laxatives need to be considered (Bruera et al 1990, Boyd & Kelly 1997, Radbruch et al 2000). Non pharmacological measures shown to provide symptomatic relief of dyspnoea and pain are supplemental home oxygen, relaxation, massage and acupuncture. Both patients and carers may find these therapies beneficial (Booth et al 1996, Meek & Schwartz 1999). The three strategies discussed above for people with mesothelioma were obtained from the general literature on cancer and the ACN Working Party on the Management of Lung Cancer (2002), however this latter document clearly states the management of pleural mesothelioma was not included in its mandate. Although these strategies can be applied to people with mesothelioma, there is a lack of international and Australian research focussing specifically on the needs of people with mesothelioma during their end-of-life experiences. This suggests future studies need to address questions such as: ● Do current palliative care services meet the needs of people with malignant mesothelioma? ● Are the needs of people with malignant mesothelioma different to those of other terminally ill patients? ● What strategies could be developed to meet the needs of people with malignant mesothelioma, their family carers and health care professionals involved in their care? Findings from such investigations have the potential to ease the burden of care on the family and lessen the crisis of living with and dying from this incurable disease. The increasing incidence of this once-rare disease, the lack of a substantial body of Australian research, and the health care costs associated with mesothelioma make research into this area essential and of national and international significance.
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Conclusion The findings from this literature review identified possible reasons why many people with mesothelioma may die in hospital despite their original intent to die at home. These reasons included disease progression and burden of care. To plan future services for patients with mesothelioma and their carers, planners and providers of health care need to be aware of strategies that can be implemented to support home based care such as early referral to a specialist palliative care team, increasing community resources like nursing care and other support services and the provision of education regarding preparation for the end of life to family carers. These strategies are cost effective measures when compared with the costs associated with hospitalisation and may contribute to lessening the gap between where a patient with mesothelioma wishes to die and where they actually die.
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NSW. The Workers Compensation (Dust Diseases) Board of NSW pp1-6. Retrieved May 7 2002 from the World Wide Web: http://www.ddb.nsw.gov.au./parent.asp?disp =re Johnson A 2000 The incidence of dust diseases compensated in NSW. Occupational Respiratory Health Report Special Edition (October): 3-8 Jones R V H, Hansford J, Fiske J 1993 Death from cancer at home: the carer’s perspective. British Medical Journal 306(6872):249-250 Krech R, Davis J, Walsh D 1992 Symptoms of lung cancer. Palliative Medicine 6:309-315 Langer A M, Pooley F D 1973 Identification of single asbestos fibres in human tissue. In: Bogovski P, Gilson J C, Timbrell V, Wagner J C (eds) Biological effects of asbestos. The International Agency for Research on Cancer, France, Lyon, pp119124 Leigh J, Davidson P, Hendrie L, Berry D 2002 Malignant mesothelioma in Australia, 1945-2000. 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Malignant mesothelioma: current practice and research directions Rhonda Hawley, Amy Monk, The University of Sydney
Abstract Malignant mesothelioma is an aggressive and fatal tumour of the mesothelial cells in the pleural cavity and peritoneum. It is significantly related to past exposure to asbestos. The number of people presenting with this disease is steadily increasing and is expected to continue to rise for at least the next 20 years. Current treatment has had little impact on morbidity and mortality rates whilst new treatment regimes are currently at the clinical trial stage. Research related to malignant mesothelioma is focused on the biomedical aspects of the disease, with no research on the unique end of life issues for this population. Anecdotal evidence from the Workers’ Compensation Dust Diseases Board (DDB) suggests that many patients with mesothelioma express the wish to die at home, yet they are often admitted into hospital in the days leading up to death and do not return home. The aims of this review were to explore the reasons why patients are admitted to hospital, to identify strategies that may support end of life care in the home and to identify directions for future research. Keywords: mesothelioma, palliative care, home care, hospitalisation, caregivers
Acknowledgements We would like to thank Professor Lindsay Gething, Louise Cahill, Judith Fethney and Jennifer King for their feedback on earlier drafts of this paper.
Rhonda Hawley PhD MEd BA DNE RN RMN CardioTthoracicCert, Director, Research Centre for Adaptation in Health and Illness, The University of Sydney Amy Monk, RN, BN (Hons) Research Assistant, Research Centre for Adaptation in Health and Illness, The University of Sydney. Email: [email protected]
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Introduction Malignant mesothelioma is an aggressive and invariably fatal tumour of the mesothelial cells in the pleural cavity and peritoneum (Munson 1997, Leigh et al 2002). Australia has the highest incidence of malignant mesothelioma in the world. This is a result of high per capita mining and extensive use of asbestos during the 1950s (Takahashi et al 1999, Leigh et al 2002). The number of malignant mesothelioma presentations per year increased by 440 % between 1985 and 1995 (Johnson et al 1995). Some 450 to 600 new cases are reported annually Australia-wide and this number is expected to increase nearly threefold by 2020 (Leigh et al 2002). The number of new presentations of mesothelioma is similar to those of uterine cancer in females (n=465) and bladder cancer in males (n=583), indicating that mesothelioma is no longer considered a rare cancer (Leigh et al 2002, Tracey & Supramaniam 2002). The rising incidence of malignant mesothelioma has substantial economic ramifications from a public health standpoint, as the number of people seeking compensation from government bodies such as The Workers’ Compensation Dust Diseases Board (DDB) of New South Wales is expected to rise (Leigh et al 2002). The predicted peak in the incidence of mesothelioma in Australia will be around the year 2010 (Johnson et al 1995). The incidence of mesothelioma has a significant positive relationship with past exposure to asbestos (Takahashi et al 1999, Leigh et al 2002). Besides miners, many secondary workers such as ship builders, insulation workers, fitters, carpenters and electricians were exposed to asbestos prior to the 1980s when strict codes of practice and handling procedures were introduced (Johnson et al 1995, Barak et al 1998, Takahashi et al 1999, Marsh et al 2001, National Occupational Health and Safety Commission 2001, Leigh et al 2002). Mesothelioma has a long latency period, whereby the time between initial exposure and diagnosis is between 32 and 53 years (Johnson et al 1995). The carcinogenic effects of asbestos have been attributed to the thin, long and needle-like shape of asbestos fibres (Langer & Pooley 1973). Once these fibres present in the upper airways they can penetrate deep inside the visceral pleura where an inflammatory and fibrotic reaction occurs. This process is thought to contribute to development of the tumour (Langer & Pooley 1973, Rom et al 1991, Aisner 1995). The onset of the disease is insidious and symptoms are non-specific for some time (Munson 1997). People often delay seeking medical
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Malignant mesothelioma: current practice and research directions
advice regarding these symptoms, permitting the tumour to grow considerably, and consequently treatment options are limited (Munson 1997). When people do present, their symptoms include dyspnoea, pain, weight loss and fatigue (Johnson et al 1995). As the disease progresses, the tumour grows relentlessly and invades nerves and other structures such as the chest wall, diaphragm and the peritoneum (Connelly et al 1987, Aisner 1995). From the time of diagnosis the median survival rate is only 280 days (Johnson et al 1995). Management options: hope for a cure A number of trials have been conducted on chemotherapeutic agents and surgical procedures as treatments for malignant mesothelioma, however these have had little effect on patient outcomes (Bissett et al 1991, Aisner 1995, Ong & Vogelzang 1996, Ryan et al 1998, de Graaf-Strukowska et al 1999, Chin et al 2002). Currently, radiation therapy is used for palliation of local pain and for symptomatic improvements, yet its effect on long term survival and disease control has been found to be insignificant (Bissett et al 1991, Aisner 1995, de Graaf-Strukowska et al 1999, Chin et al 2002). Trials that have implemented different combinations of surgery, chemotherapy and radiation therapy have been more successful in improving median survival rates than those that have used only one type of intervention (Rusch et al 1994, Sugarbaker et al 1996, Zellos & Sugarbaker 2002). Surgical procedures, such as pleurectomy and extrapleural pneumonectomy, when used in conjunction with chemotherapy and radiation therapy, have been shown to prolong the lives of those diagnosed in the early stages of the disease, especially when the tumour is confined to the pleural space (Sugarbaker et al 1996, Zellos & Sugarbaker 2002). However, these types of interventions may increase the burden of symptoms in those who are older and have pre-existing co-morbidities (Smythe 2002). New therapies and approaches that use combinations of antifolates and chemotherapy agents such as cisplatin are producing positive results. Antifolates are drugs that target the folic acid metabolic path and are shown to be the most effective compounds on malignant mesothelioma cells. These regimes are currently at the clinical trial stage (Aisner 1995, Fizazi et al 2002, Smythe 2002, Steele 2003). New biological treatments, chemotherapy agents and surgical procedures for patients with malignant mesothelioma are focused on biomedical outcomes such as tumour suppression and disease-free states but the long term benefits are unknown. While these management strategies can also relieve symptoms and prolong survival times their results infrequently meet the expectations or hopes of patients and their carers. Research into other aspects of caring for people with mesothelioma when a cure is not possible, such as end of life care, has not kept abreast of these medical advances. End of life care: a wish to die at home The DDB have regular contact with approximately two thirds of people within New South Wales who have mesothelioma (Johnson 2000). This organisation provides monetary compensation, hospital type equipment and other services, such as counselling, to people with mesothelioma deemed as eligible under the Workers’ Compen-
sation (Dust Diseases) Act, 1942 (Johnson 2000). The DDB have provided anecdotal evidence suggesting that besides a hope for a cure, one of the main issues for people with mesothelioma is the location of their end of life care and subsequent death. They identified that although many clients express the wish to die at home, they are often admitted into hospital in the days leading up to death and do not return home (personal communication DDB). As there is no research that identifies the dynamics of this process among people with mesothelioma, we explored the literature to identify reasons why people may die in hospital despite their original intent to stay at home. The outcome of this review provides recommendations for practice and directions for further research. Expressing the need to receive end of life care at home for people with a terminal illness is well documented in the literature. According to Ratner et al (2001) and supported by others (Townsend et al 1990, Hinton 1994, Gilbar & Steiner 1996, Evans & Walsh 2002) between 82% and 89% of patients and carers expressed a wish for care and the death to occur in this environment. The reasons given for this preference included: the ability of the dying person to have some sense of control or influence over their care; to strengthen family relationships; to feel needed in the home; to receive psychological and emotional comfort from the family, and to be able to face death with loved ones (Ratner et al 2001, Evans & Walsh 2002). From a health care service standpoint, home deaths are also less expensive than hospital deaths and they ease the burden on the increasing shortage of hospice, palliative care and acute hospital beds available for terminally ill patients (Gilbar & Steiner 1996). Despite the many benefits related to dying at home there appears a large gap between where a person wishes to die and where they actually die. A study by Townsend et al (1990) reported that of the 70% of terminally ill patients who expressed a wish to die at home only 30% of these people actually died there. According to Evans and Walsh (2002) the incidence of home death for patients with a terminal illness has shown a steady decline for sometime. In 1965 the rate of home deaths for cancer patients was 37%, and in 1987 and 1994 the rates had dropped to 27% and 22% respectively (Evans & Walsh 2002). This trend seems to suggest that during end of life care in the home, situations arise that would be best managed in a more appropriate care setting (Fainsinger et al 2000). The literature suggests disease progression and burden of care on the family are the two most likely factors that will influence end of life decisions and change the preference from a home to a hospital death for people with mesothelioma and their carers. Disease progression For patients with advanced lung cancer, and in this case mesothelioma, the reality of rapid progression of the disease, increasing physical symptoms, decreasing functional ability and lower quality of life, presents enormous challenges for the individual and his/her carers (ACN Working Party on the Management of Lung Cancer 2002). In particular, patients with mesothelioma experience more symptoms such as dyspnoea, pain, anorexia, fatigue and cough compared with people who have a range of other cancers such as breast cancer and colon cancer (Cooley 2000). The level of distress (fear, anxiety and
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panic) related to dyspnoea is also higher in those with lung cancer (Cooley 2000). The two symptoms most likely to lead to a hospital admission for people with mesothelioma are dyspnoea and pain. Dyspnoea is experienced by 70% of people with lung cancer and in mesothelioma it is generally related to recurrent malignant pleural effusion (Krech et al 1992, Vainio & Auvinen 1996). Admission to hospital may then be required for thoracentesis and in some cases patients may require chemical pleurodesis (Krech et al 1992, Vainio & Auvinen 1996). In the early stages of the disease these procedures may relieve the dyspnoea and the patient can return home. It may however not always be possible to control the dyspnoea completely and patients remain hospitalised until death occurs. Like dyspnoea, pain is also experienced by the vast majority (86%) of patients with mesothelioma and may be difficult to manage at home especially if the patient is experiencing breakthrough pain severe uncontrolled pain (Krech et al 1992). Although Cartwright (1991) found that 87% of nurses thought it was possible to control pain for most people dying at home, over one third of these nurses reported that in reality it was not actually managed well. One reason cited was lack of knowledge about appropriate analgesia which presented problems for both nurses and general practioners when they needed to determine the type and dose of analgesic to administer. The other reason was related to inadequate communication between patients and health care professionals resulting in the frequency and severity of pain being poorly assessed. Admission to hospital may be required for appropriate pain assessment, for review of medications or for intravenous analgesics to provide rapid control of moderate to severe pain (Krech et al 1992, Vainio & Auvinen 1996). Burden of care The second reason why the location of death may change from the home to hospital is the burden of care on the family. Currently most patients with mesothelioma are over 65 years of age and the primary responsibility for home care falls on the family, especially the spouse (Fainsinger et al 2000, Johnson 2000). Patients in this age bracket are more likely to have a spouse over 60 years of age (Gilbar & Steiner 1996). While the physical, psychological and emotional resources required to provide home care may be adequate in the early stages of the disease, when the disease progresses rapidly and the condition of the patient deteriorates these resources may become depleted, resulting in a hospital admission (Jones et al 1993, Gilbar & Steiner 1996). A retrospective medical chart audit (n=191) conducted by Gilbar and Steiner (1996) demonstrated that one of the variables influencing the place of death was the patient’s age. This study found that patients aged 50-59 and who had a younger spouse were more likely to die in the place of their choice as economic, psychological and emotional resources were adequate to manage prolonged care at home. On the other hand patients over 60 years of age were more likely to die in a hospital setting as their spouse was older, family income was likely to be lower and extended family members were more likely to have their own commitments, resulting in consistent help not always being available over prolonged periods. In addition, friends and neighbours could offer little support, as they were generally older themselves. 24
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Dying in hospital The family providing the care for a terminally ill patient may need respite care for a number of reasons such as when the carer becomes over anxious about managing worsening symptoms and begins to lose weight and suffer from insomia or carer burnout. In these situations admission to an acute hospital may be the only option available. A study by Fried et al (1999) revealed 48% (n=118) of terminally ill patients preferred their palliative care to be carried out in hospital, because they felt hospitals had the resources and staffing levels to provide the care required. Hinton (1994) reported family caregivers were satisfied when their relatives died in hospital because of the difficulties related to caring for and managing the symptoms of a terminally ill person during their last days. An earlier study conducted by Townsend et al (1990) found there were some carers of people who died at home who thought the patient would have received better care in hospital. Hospital deaths can also have negative ramifications particularly when they occur in acute, rather than palliative, care settings. People with a terminal illness are often admitted to these acute areas within hospitals such as accident and emergency, medicalsurgical wards or intensive care units where they receive treatment outside the realm of palliative care (Prior & Poulton 1996, Fainsinger et al 2000). For example, a large prospective study by Lynn et al (1997) found 56% (n=1880) of the patients in five major teaching hospitals received at least one life-sustaining treatment during the three days before death, including resuscitation, ventilation and feeding tubes. Clark (2002) also found 47% of elderly patients with advanced cancer or dementia received invasive non-palliative treatments during their final few days. Other people have also expressed dissatisfaction with hospital care when compared to home care due to difficulty in accessing transport to and from hospital, lack of support from hospital staff and problems associated with busy and noisy wards (Fakhoury et al 1996). Townsend et al (1990) reported acute hospitals lack facilities that allow families to visit and spend time with dying relatives. These facilities included access to overnight accommodation close to the patient and access to meals and refreshments. In addition, an Australian study (McGrath 2001) using qualitative in-depth interviews, found hospital staff did not always respect the desire for carers to be with their dying relative. While there may be some disadvantages of dying in hospital these can be overcome by nurses and doctors paying particular attention not only to symptom control but also to the emotional and psychological support required by the patient and family. Admission to hospital especially during the last days of life needs to be seen not only as a positive and an appropriate indicator of end of life care but also as part of the continuum of care. An important component of this continuum of care is agreement on the goals of care between hospital and community staff, the patient and the family. When these have been established death can occur peacefully even in the hospital setting (Fried et al 1999).
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Recommendations for practice and directions for further research To plan future services for patients with mesothelioma and their carers, planners and providers of health care need to be aware of possible strategies to lessen the gap between where a patient wishes to die and where they actually die. A consensus exists in the literature regarding three main strategies. The first is a need for early referral to a specialist palliative care team. Although these services are well established there is evidence to suggest the majority of cancer patients receive limited or no palliative care (Fakhoury et al 1996, Evans & Walsh 2002). According to the ACN Working Party on the Management of Lung Cancer (2002) involvement of a palliative care team not only facilitates continuity of care between the hospital and community but also provides grief and bereavement support for carers during the illness experience and following the death. Other advantages of palliative care include 24-hour telephone contact, increased patient and carer satisfaction, an overall reduction in the cost of care, reduced time spent in hospital and increased time spent at home by the patient (ACN Working Party on the Management of Lung Cancer 2002). A second strategy that would allow patients to die in a place of their choice would be the provision of adequate community support including nursing care and other support services (Cartwright 1991, Fakhoury et al 1996). According to both Fakhoury et al (1996) and Field and McGaughey (1998), community nurses are central to palliative care provided in the home as they are the most frequent and constant source of help to patients and their family carers. While patients and relatives reported high levels of satisfaction with medical care, overall they were factors such as the time community nurses spent with the dying patient, their ability to coordinate care and their ability to coordinate other services provided to the dying patient that were more likely to increase satisfaction levels with home care (Fakhoury et al 1996, Field & McGaughey 1998). Further, increasing the number of visits by a nurse allows the opportunity for a strong trusting relationship to develop with the patient and his/her carer. Once this relationship has been established the nurse can provide the emotional and psychosocial support that are integral to successful caring (Fakhoury et al 1996). Field and McGaughey (1998) in particular asserted that in their study, many patients (66 %) admitted to hospital did not require 24hour nursing care. Seale et al (1997) suggested if regular visits were made by community nurses and information was provided on services such as home help, financial support and other allied health services the number of home deaths would increase from 29% to 44% for those patients who had indicated home as the preferred place to die. Allocating sufficient resources to allow community nurses to make regular visits to terminally ill patients at home and providing other support services would appear to be a cost-effective alternative to hospitalisation. This strategy would also improve the quality of life for both patients and families. The final strategy to support families and increase the number of home deaths where appropriate is the provision of education to family carers regarding preparation for end of life care. A study conducted by Steinhauser et al (2001) using both focus groups
(n=12) and a national survey (n=1462) affirmed the importance of the family understanding that there are dual tasks involved in home based palliative care in that there is a need to help prepare the patient as well as themselves for the patient’s death. Part of this preparation process involves health care professionals providing information on what to expect about the physical condition of the patient. Having sufficient warning about the physical decline of the patient also gives the family time to put their financial affairs in order, to resolve unfinished business, to talk with close friends and to remember personal achievements. Focusing on these aspects enables the family to gain a sense of completeness and closure, as issues can be resolved prior to the death. Another part of this process is educating the family on how to manage the changes that accompany physical decline such as dyspnoea, pain, nausea and constipation. Opioids such as morphine are the drugs of choice both for the symptomatic relief of dyspnoea and for moderate to severe pain. Intermittent dosing can be adequate if dyspnoea and pain are not continuous but this needs to change to regular doses if both or either symptoms persist (Bruera et al 1990, Boyd & Kelly 1997). The basis of the action of morphine is its sedative effect on the respiratory centre and its central effect on pain receptors (Meek & Schwartz 1999). While morphine can be used safely to manage dyspnoea and cancer pain without fear of tolerance or addiction the side effects of nausea and constipation can be troublesome. When morphine is used anti-emetics and regular laxatives need to be considered (Bruera et al 1990, Boyd & Kelly 1997, Radbruch et al 2000). Non pharmacological measures shown to provide symptomatic relief of dyspnoea and pain are supplemental home oxygen, relaxation, massage and acupuncture. Both patients and carers may find these therapies beneficial (Booth et al 1996, Meek & Schwartz 1999). The three strategies discussed above for people with mesothelioma were obtained from the general literature on cancer and the ACN Working Party on the Management of Lung Cancer (2002), however this latter document clearly states the management of pleural mesothelioma was not included in its mandate. Although these strategies can be applied to people with mesothelioma, there is a lack of international and Australian research focussing specifically on the needs of people with mesothelioma during their end-of-life experiences. This suggests future studies need to address questions such as: ● Do current palliative care services meet the needs of people with malignant mesothelioma? ● Are the needs of people with malignant mesothelioma different to those of other terminally ill patients? ● What strategies could be developed to meet the needs of people with malignant mesothelioma, their family carers and health care professionals involved in their care? Findings from such investigations have the potential to ease the burden of care on the family and lessen the crisis of living with and dying from this incurable disease. The increasing incidence of this once-rare disease, the lack of a substantial body of Australian research, and the health care costs associated with mesothelioma make research into this area essential and of national and international significance.
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Conclusion The findings from this literature review identified possible reasons why many people with mesothelioma may die in hospital despite their original intent to die at home. These reasons included disease progression and burden of care. To plan future services for patients with mesothelioma and their carers, planners and providers of health care need to be aware of strategies that can be implemented to support home based care such as early referral to a specialist palliative care team, increasing community resources like nursing care and other support services and the provision of education regarding preparation for the end of life to family carers. These strategies are cost effective measures when compared with the costs associated with hospitalisation and may contribute to lessening the gap between where a patient with mesothelioma wishes to die and where they actually die.
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