JOURNAL OF PALLIATIVE MEDICINE Volume 17, Number 1, 2014 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2013.0162
On Not So Foreign Terms Annie Ngai Man Wong, MBChB
H
e struggled to breathe. He was confused, he thought he was at home. He dreamed of past ancestors. This is the end. He told me not to worry. Mrs. C was surprisingly calm. She knew of the road ahead and made sure that Mr. C was attended to. She sat with him. She held the grandchildren and made sure the family was fed and rested. Mr. C emigrated from China in the ’70s, worked hard all his life in market gardening, and brought up four children with his wife: all university graduates, accountants and businessmen among them. He fell ill in his ’60s with a cough, which revealed a lung cancer. He went on to receive chemotherapy treatment and this worked well, keeping him alive for three years. He had repeated admissions to hospital with exacerbations of his chronic obstructive airway disease, and the oncology wing of the hospital became his second home. He seemed to be invincible, coming in in extremis, but sure enough, on the second day after steroids, antibiotics, and inhalers, he would bounce back and pace the corridors, returning to his morning walking routine. This time, though, he had taken a rapid turn for the worse, becoming delirious and agitated. Family had been gathered from all corners of the world: Hong Kong, New York, London. Now his room brimmed with his four children and many grandchildren. His wife, quiet, watching her husband from the corner of the room, looking to the children to talk to the doctors. Mrs. C had little English and had trouble understanding her children’s broken Chinese when they relayed the consultation back. As I am Chinese, my team now turned to me to assist with the translation. This was a delicate time for the family. As an oncology trainee, I had already spent years learning how to find the right words for these situations, and no doubt had years of learning still to come—in English, never mind Cantonese. How then to comfort this patient and his family when they needed it most? I worried about the clumsiness of my wording. In the end, though, I was surprised to find that Mrs. C was simply relieved to have someone there with whom she could communicate, even at the most basic level. Imagine what it must be like to die in a foreign land, or watch loved ones go without being able to advocate for them. This was her most vulnerable time, and above all, she needed someone to listen. She was not interested in more lines of treatment or any targeted therapies. She wanted to make sure that the man she cared for was not in pain and did not gasp with every breath.
Caring for patients whose native language is not English can be challenging and time consuming. We aim to ease this with the use of translators. At times we are dependent on family and other staff members to do this, which can pose its own ethical dilemmas. Even then, the art of communication is central to oncology, and in a second language it is almost impossible to express things as clearly and delicately as we would like. To me, though, this experience was a reminder that, at its core, effective communication in these situations can be as simple as the patient having his or her concerns heard and being shown humanity. That said, it can also help to acknowledge the different cultural expectations and take time to understand them. For one thing, the Chinese are a diverse group of people. Recording the patient’s native language as ‘Chinese’ is not very helpful—the two most common Chinese dialects outside China are Mandarin and Cantonese, but there are many other regional dialects, which may mean a translator is of limited help. Similarly, immigrants come from a wide range of backgrounds. Many of the older generation emigrated in search of a better life, working menial jobs in the hope that their children would do better. They were followed by subsequent waves of immigration: intellectuals escaping political persecution, and more recently, the rapidly rising upper class looking for a higher standard of living, and especially a higher standard of health care. As with all else in oncology: Never assume. As in many cultures, death and dying are shrouded with traditions, both cultural and religious. The religions include not only Taoism, Buddism, and Christianity, but many folk regions too, and it is important to find out what death and dying mean to the patient and his or her family. Some families may not consider themselves religious but may still be affected by spiritual beliefs so embedded in tradition and culture that it is impossible to separate the two. For many it is accepted that ancestors may visit in the end-of-life phase to take the patient to the afterlife. There may also be preferences for the handling of the body once the patient dies; for example, the older generation may prefer to have their bodies buried in their home village, and cremation could be seen as an offense. There may be a disconnect between the traditional wishes of the older generation and the undoubtedly more modern expectations of their children. This dynamic is not uncommon with Caucasian families, but may be exacerbated in Chinese
Wellington Blood and Cancer Centre, Wellington, New Zealand.
110
PERSONAL REFLECTION families by the greater cultural divide between immigrant parents and their Westernized children, and also by a language barrier. It is not uncommon for children to have only a rudimentary grasp of their parents’ native language, and vice versa. Dealing with these challenges will require increasing attention as our population continues to age and diversify. Fortunately for the oncologist, there is an increasing amount of Chinese-language patient information available from reputable sources online. These sources offer information not only on diagnoses and treatments, but also palliative care and bereavement. Becoming familiar with these materials is likely to be time well spent for any oncologist. All in all, caring for Mr. and Mrs. C showed me that language should not be the barrier. Like many other aspects of
111 oncology practice, it takes time and effort to clarify patients’ concerns and their expectations. This case allowed us to reflect on different practices around end-of-life care in different cultures and reinforce that the unifying aim, regardless of language, is to provide our patients with our support and relief from suffering. Address correspondence to: Annie Ngai Man Wong, MBChB Wellington Blood and Cancer Centre Wellington Hospitals Riddiford Street Newtown Wellington, New Zealand E-mail: [email protected]
On Not So Foreign Terms Annie Ngai Man Wong, MBChB
H
e struggled to breathe. He was confused, he thought he was at home. He dreamed of past ancestors. This is the end. He told me not to worry. Mrs. C was surprisingly calm. She knew of the road ahead and made sure that Mr. C was attended to. She sat with him. She held the grandchildren and made sure the family was fed and rested. Mr. C emigrated from China in the ’70s, worked hard all his life in market gardening, and brought up four children with his wife: all university graduates, accountants and businessmen among them. He fell ill in his ’60s with a cough, which revealed a lung cancer. He went on to receive chemotherapy treatment and this worked well, keeping him alive for three years. He had repeated admissions to hospital with exacerbations of his chronic obstructive airway disease, and the oncology wing of the hospital became his second home. He seemed to be invincible, coming in in extremis, but sure enough, on the second day after steroids, antibiotics, and inhalers, he would bounce back and pace the corridors, returning to his morning walking routine. This time, though, he had taken a rapid turn for the worse, becoming delirious and agitated. Family had been gathered from all corners of the world: Hong Kong, New York, London. Now his room brimmed with his four children and many grandchildren. His wife, quiet, watching her husband from the corner of the room, looking to the children to talk to the doctors. Mrs. C had little English and had trouble understanding her children’s broken Chinese when they relayed the consultation back. As I am Chinese, my team now turned to me to assist with the translation. This was a delicate time for the family. As an oncology trainee, I had already spent years learning how to find the right words for these situations, and no doubt had years of learning still to come—in English, never mind Cantonese. How then to comfort this patient and his family when they needed it most? I worried about the clumsiness of my wording. In the end, though, I was surprised to find that Mrs. C was simply relieved to have someone there with whom she could communicate, even at the most basic level. Imagine what it must be like to die in a foreign land, or watch loved ones go without being able to advocate for them. This was her most vulnerable time, and above all, she needed someone to listen. She was not interested in more lines of treatment or any targeted therapies. She wanted to make sure that the man she cared for was not in pain and did not gasp with every breath.
Caring for patients whose native language is not English can be challenging and time consuming. We aim to ease this with the use of translators. At times we are dependent on family and other staff members to do this, which can pose its own ethical dilemmas. Even then, the art of communication is central to oncology, and in a second language it is almost impossible to express things as clearly and delicately as we would like. To me, though, this experience was a reminder that, at its core, effective communication in these situations can be as simple as the patient having his or her concerns heard and being shown humanity. That said, it can also help to acknowledge the different cultural expectations and take time to understand them. For one thing, the Chinese are a diverse group of people. Recording the patient’s native language as ‘Chinese’ is not very helpful—the two most common Chinese dialects outside China are Mandarin and Cantonese, but there are many other regional dialects, which may mean a translator is of limited help. Similarly, immigrants come from a wide range of backgrounds. Many of the older generation emigrated in search of a better life, working menial jobs in the hope that their children would do better. They were followed by subsequent waves of immigration: intellectuals escaping political persecution, and more recently, the rapidly rising upper class looking for a higher standard of living, and especially a higher standard of health care. As with all else in oncology: Never assume. As in many cultures, death and dying are shrouded with traditions, both cultural and religious. The religions include not only Taoism, Buddism, and Christianity, but many folk regions too, and it is important to find out what death and dying mean to the patient and his or her family. Some families may not consider themselves religious but may still be affected by spiritual beliefs so embedded in tradition and culture that it is impossible to separate the two. For many it is accepted that ancestors may visit in the end-of-life phase to take the patient to the afterlife. There may also be preferences for the handling of the body once the patient dies; for example, the older generation may prefer to have their bodies buried in their home village, and cremation could be seen as an offense. There may be a disconnect between the traditional wishes of the older generation and the undoubtedly more modern expectations of their children. This dynamic is not uncommon with Caucasian families, but may be exacerbated in Chinese
Wellington Blood and Cancer Centre, Wellington, New Zealand.
110
PERSONAL REFLECTION families by the greater cultural divide between immigrant parents and their Westernized children, and also by a language barrier. It is not uncommon for children to have only a rudimentary grasp of their parents’ native language, and vice versa. Dealing with these challenges will require increasing attention as our population continues to age and diversify. Fortunately for the oncologist, there is an increasing amount of Chinese-language patient information available from reputable sources online. These sources offer information not only on diagnoses and treatments, but also palliative care and bereavement. Becoming familiar with these materials is likely to be time well spent for any oncologist. All in all, caring for Mr. and Mrs. C showed me that language should not be the barrier. Like many other aspects of
111 oncology practice, it takes time and effort to clarify patients’ concerns and their expectations. This case allowed us to reflect on different practices around end-of-life care in different cultures and reinforce that the unifying aim, regardless of language, is to provide our patients with our support and relief from suffering. Address correspondence to: Annie Ngai Man Wong, MBChB Wellington Blood and Cancer Centre Wellington Hospitals Riddiford Street Newtown Wellington, New Zealand E-mail: [email protected]
