JOURNAL OF PALLIATIVE MEDICINE Volume 17, Number 3, 2014 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2014.9445
Until the Very End: Is There Equity in Palliative Care? Lukas Radbruch, MD1,2 and Martina Kern 3
Dear Editor: With the ongoing demographic transition, life expectancies of women and men are increasing, but not all of the additional life time is spent in good health. Cancer and other diseases are more frequent in the elderly. Even with the rapid development of modern medicine, many conditions and diseases cannot be cured, and sooner or later will lead to severe illness and death. More often than not patients are suffering throughout the last stages of their illness. Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening 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.1 Palliative care uses compassion and empathy as core competencies, as well as respect for the patient’s autonomy. This is much about talking, and communication with the patient, but also with the caregivers is an essential skill in palliative care. It seems that these are more female than male competencies, and thus it may not astonish that modern palliative care was started by strong women pioneers such as Dame Cicely Saunders or Elisabeth Ku¨bler-Ross. However, in spite of 40 years since the initiation of modern palliative care, what is the usual perspective of women in modern Western societies? Statistically they live longer, but get lower salaries, and traditionally they have patched career pathways, as in most families it still is the woman who has a family break to care for the children or for an elderly family member. In old age, chances are that the husband will become ill with a chronic disease and after a shorter or longer period of time, during which he will have received care from his wife, finally dies. He will be able to stay at home during his illness, as the wife can provide basic care. With his death the larger part of the old age pension will be gone, and she may have to leave the family home due to lack of money. If she becomes ill a few years later, there will be no spouse to care for her, and with modern family structures more likely than not another family member also will not be able to care for her. She will have to receive care in a nursing home, often with a much lower level of comfort than would have been possible at home. Even in resource-rich countries she may not be able to access adequate palliative care. In some countries this has been recognized, and specific efforts have
1 2 3
been made to make specialized palliative home care available to all who need it, for example in the United Kingdom2 or in Germany.3 In resource-poor settings the situation may be much more serious. Traditionally women have the role of caregivers, and men might even find it difficult to provide care for family members or as a volunteer, as this would not be in accordance with their role in society. When women suffer from chronic illness and are no longer able to care for their families, they may not only have problems receiving appropriate care, but even may be abandoned by their families when they cannot comply with their role in the family any more. Our own research interviewing patients with HIV/AIDS in The Gambia showed that terminally ill patients in The Gambia suffered not only from physical symptoms, but also from lack of open communication and support in their families. HIV/AIDS has a massive negative impact on family networks, with infection pathways following subsequent marriages after the disease-related death of a spouse (often connected with feelings of guilt, shame, or rage), as tradition requires that the brother of the deceased husband marries the widow (which also provides social security for her), but then may transmit the disease from the widow to his other wives. Other interviews confirmed that men walked out of their families when the wife was found to be infected or that women were not being able to access palliative care services because their husbands did not allow it or did not provide any means (transport, money) to get access to the service. Women did not dare to inform their families about their HIV/AIDS infection because they were afraid of social castigation. When the diagnosis was revealed, sometimes even the grownup children would cut all contacts with their mother, leaving her without any social network for the care that she needed. Traditional family structures have been damaged severely in some parts of Africa with the death toll of HIV/AIDS, and this has influenced the role of women as well. With the middle generation being removed from the families, the grandparents had to take up the twin responsibilities of providing the income for the necessities of life, and to care for the children. There is a generation of grandmothers caring for their children suffering from HIV/AIDS, raising their grandchildren and providing the family income on the side.
Klinik fu¨r Palliativmedizin, Universita¨tsklinikum Bonn, Bonn, Germany. Zentrum fu¨r Palliativmedizin, Malteser Krankenhaus Seliger Gerhard Bonn/Rhein-Sieg, Germany. ALPHA Rheinland, Bonn, Germany.
262
LETTERS TO THE EDITOR
Similar interviews in the Indian state of Kerala demonstrated the tremendous impact that cancer had on the life and role function of women. Financial problems were a major part of the disease burden, as patients experienced the loss of jobs and social prestige in the course of illness. Sorrows about the children’s future because of debts were reported as very distressing and preyed on their existential meaning of life. Asked about what keeps the patient going, many brought up their children’s education or their daughter’s marriage. ‘‘I have debts of Rs50000 due to my daughter‘s marriage..Before my death she has to get married so I arranged a marriage for her and she got married. I borrowed money from a family but they want their money back because their daughter will be getting married shortly.’’4
What would be needed to improve care at the end of life? The provision of palliative care may relieve symptoms and reduce suffering in women with life-threating diseases, and support from palliative care for diseased family members can also reduce the burden of care for women. The integration of volunteers is an integral part of palliative care, and this may expand the social network that supports the patient and his or her caregivers. Social concepts and other barriers still impede the implementation of palliative care. Professionals may find it hard to accept new concepts of comprehensive care such as open communication and disclosure, especially if the social tradition in their setting opposes these concepts. The use of controlled medicines such as morphine for relief of pain or dyspnea often is regarded with suspicion and may meet strict legal and administrative barriers for fear of abuse. The European Association for Palliative Care (EAPC), the International Association for Palliative Care (IAHPC), the Worldwide Palliative Care Alliance (WPCA), and Human Rights Watch (HRW) have recently launched the Prague Charter, a joint action program urging governments to relieve suffering and ensure the human right to palliative care.5 Governments should develop health policies that address the needs of patients with life-limiting or terminal illnesses, they should ensure access to essential medicines, including controlled medications, to all who need them, and they should
263
ensure the integration of palliative care into health care systems at all levels. They should also ensure that health care workers receive adequate training on palliative care and pain management at undergraduate and subsequent levels. Considering the inequities described above it seems paramount that governments have to make special provisions to ensure adequate access to palliative care for women. The mandate to provide adequate palliative care to all those who need it and not leave them to suffer from their illness comes from Dame Cicely Saunders: ‘‘You matter because you are you, and you matter until the last moment of your life. We will do all we can, not only to help you die peacefully, but also to live until you die.’’ References
1. Sepulveda C, Marlin A, Yoshida T, Ullrich A: Palliative care: The World Health Organization’s global perspective. J Pain Symptom Manage 2002;24:91–96. 2. U.K. Department of Health: End of Life Care Strategy: Promoting High Quality Care for All Adults at the End of Life. London: U.K. Department of Health, 2008. 3. Radbruch L, Bausewein C, Simon ST, Sipp W, Wodarg W, Ju¨nger S: Europa¨ische Empfehlungen zur Palliativversorgung und Hospizarbeit und ihre Umsetzung in Deutschland. Zeitschrift fu¨r Palliativmedizin 2011;12:175–183. 4. Elsner F, Schmidt J, Rajagopal M, Radbruch L, Pestinger M: Psychosocial and spiritual problems of terminally ill patients in Kerala, India. Future Oncol 2012;8:1183–1191. 5. Radbruch L, de Lima L, Lohmann D, Gwyther E, Payne S: The Prague Charter: Urging governments to relieve suffering and ensure the right to palliative care. Palliat Med 2013; 27:101–102.
Address correspondence to: Lukas Radbruch, MD Klinik fu¨r Palliativmedizin Universita¨tsklinikum Bonn Sigmund Freud Strasse 25, 53127 Bonn Germany E-mail: [email protected]
Until the Very End: Is There Equity in Palliative Care? Lukas Radbruch, MD1,2 and Martina Kern 3
Dear Editor: With the ongoing demographic transition, life expectancies of women and men are increasing, but not all of the additional life time is spent in good health. Cancer and other diseases are more frequent in the elderly. Even with the rapid development of modern medicine, many conditions and diseases cannot be cured, and sooner or later will lead to severe illness and death. More often than not patients are suffering throughout the last stages of their illness. Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening 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.1 Palliative care uses compassion and empathy as core competencies, as well as respect for the patient’s autonomy. This is much about talking, and communication with the patient, but also with the caregivers is an essential skill in palliative care. It seems that these are more female than male competencies, and thus it may not astonish that modern palliative care was started by strong women pioneers such as Dame Cicely Saunders or Elisabeth Ku¨bler-Ross. However, in spite of 40 years since the initiation of modern palliative care, what is the usual perspective of women in modern Western societies? Statistically they live longer, but get lower salaries, and traditionally they have patched career pathways, as in most families it still is the woman who has a family break to care for the children or for an elderly family member. In old age, chances are that the husband will become ill with a chronic disease and after a shorter or longer period of time, during which he will have received care from his wife, finally dies. He will be able to stay at home during his illness, as the wife can provide basic care. With his death the larger part of the old age pension will be gone, and she may have to leave the family home due to lack of money. If she becomes ill a few years later, there will be no spouse to care for her, and with modern family structures more likely than not another family member also will not be able to care for her. She will have to receive care in a nursing home, often with a much lower level of comfort than would have been possible at home. Even in resource-rich countries she may not be able to access adequate palliative care. In some countries this has been recognized, and specific efforts have
1 2 3
been made to make specialized palliative home care available to all who need it, for example in the United Kingdom2 or in Germany.3 In resource-poor settings the situation may be much more serious. Traditionally women have the role of caregivers, and men might even find it difficult to provide care for family members or as a volunteer, as this would not be in accordance with their role in society. When women suffer from chronic illness and are no longer able to care for their families, they may not only have problems receiving appropriate care, but even may be abandoned by their families when they cannot comply with their role in the family any more. Our own research interviewing patients with HIV/AIDS in The Gambia showed that terminally ill patients in The Gambia suffered not only from physical symptoms, but also from lack of open communication and support in their families. HIV/AIDS has a massive negative impact on family networks, with infection pathways following subsequent marriages after the disease-related death of a spouse (often connected with feelings of guilt, shame, or rage), as tradition requires that the brother of the deceased husband marries the widow (which also provides social security for her), but then may transmit the disease from the widow to his other wives. Other interviews confirmed that men walked out of their families when the wife was found to be infected or that women were not being able to access palliative care services because their husbands did not allow it or did not provide any means (transport, money) to get access to the service. Women did not dare to inform their families about their HIV/AIDS infection because they were afraid of social castigation. When the diagnosis was revealed, sometimes even the grownup children would cut all contacts with their mother, leaving her without any social network for the care that she needed. Traditional family structures have been damaged severely in some parts of Africa with the death toll of HIV/AIDS, and this has influenced the role of women as well. With the middle generation being removed from the families, the grandparents had to take up the twin responsibilities of providing the income for the necessities of life, and to care for the children. There is a generation of grandmothers caring for their children suffering from HIV/AIDS, raising their grandchildren and providing the family income on the side.
Klinik fu¨r Palliativmedizin, Universita¨tsklinikum Bonn, Bonn, Germany. Zentrum fu¨r Palliativmedizin, Malteser Krankenhaus Seliger Gerhard Bonn/Rhein-Sieg, Germany. ALPHA Rheinland, Bonn, Germany.
262
LETTERS TO THE EDITOR
Similar interviews in the Indian state of Kerala demonstrated the tremendous impact that cancer had on the life and role function of women. Financial problems were a major part of the disease burden, as patients experienced the loss of jobs and social prestige in the course of illness. Sorrows about the children’s future because of debts were reported as very distressing and preyed on their existential meaning of life. Asked about what keeps the patient going, many brought up their children’s education or their daughter’s marriage. ‘‘I have debts of Rs50000 due to my daughter‘s marriage..Before my death she has to get married so I arranged a marriage for her and she got married. I borrowed money from a family but they want their money back because their daughter will be getting married shortly.’’4
What would be needed to improve care at the end of life? The provision of palliative care may relieve symptoms and reduce suffering in women with life-threating diseases, and support from palliative care for diseased family members can also reduce the burden of care for women. The integration of volunteers is an integral part of palliative care, and this may expand the social network that supports the patient and his or her caregivers. Social concepts and other barriers still impede the implementation of palliative care. Professionals may find it hard to accept new concepts of comprehensive care such as open communication and disclosure, especially if the social tradition in their setting opposes these concepts. The use of controlled medicines such as morphine for relief of pain or dyspnea often is regarded with suspicion and may meet strict legal and administrative barriers for fear of abuse. The European Association for Palliative Care (EAPC), the International Association for Palliative Care (IAHPC), the Worldwide Palliative Care Alliance (WPCA), and Human Rights Watch (HRW) have recently launched the Prague Charter, a joint action program urging governments to relieve suffering and ensure the human right to palliative care.5 Governments should develop health policies that address the needs of patients with life-limiting or terminal illnesses, they should ensure access to essential medicines, including controlled medications, to all who need them, and they should
263
ensure the integration of palliative care into health care systems at all levels. They should also ensure that health care workers receive adequate training on palliative care and pain management at undergraduate and subsequent levels. Considering the inequities described above it seems paramount that governments have to make special provisions to ensure adequate access to palliative care for women. The mandate to provide adequate palliative care to all those who need it and not leave them to suffer from their illness comes from Dame Cicely Saunders: ‘‘You matter because you are you, and you matter until the last moment of your life. We will do all we can, not only to help you die peacefully, but also to live until you die.’’ References
1. Sepulveda C, Marlin A, Yoshida T, Ullrich A: Palliative care: The World Health Organization’s global perspective. J Pain Symptom Manage 2002;24:91–96. 2. U.K. Department of Health: End of Life Care Strategy: Promoting High Quality Care for All Adults at the End of Life. London: U.K. Department of Health, 2008. 3. Radbruch L, Bausewein C, Simon ST, Sipp W, Wodarg W, Ju¨nger S: Europa¨ische Empfehlungen zur Palliativversorgung und Hospizarbeit und ihre Umsetzung in Deutschland. Zeitschrift fu¨r Palliativmedizin 2011;12:175–183. 4. Elsner F, Schmidt J, Rajagopal M, Radbruch L, Pestinger M: Psychosocial and spiritual problems of terminally ill patients in Kerala, India. Future Oncol 2012;8:1183–1191. 5. Radbruch L, de Lima L, Lohmann D, Gwyther E, Payne S: The Prague Charter: Urging governments to relieve suffering and ensure the right to palliative care. Palliat Med 2013; 27:101–102.
Address correspondence to: Lukas Radbruch, MD Klinik fu¨r Palliativmedizin Universita¨tsklinikum Bonn Sigmund Freud Strasse 25, 53127 Bonn Germany E-mail: [email protected]
