JOURNAL OF PALLIATIVE MEDICINE Volume 18, Number 2, 2015 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2014.0214
The Conversation Towhid Imam, MBBS, BSc (Hons), MRCP (UK), DGM
I
n the National Health Service (NHS) in the United Kingdom it often falls upon the general medical team to initiate difficult conversations. Some clinicians evade it. Others take it head on. Experience does not dictate how well it is held, but skill does. From my observations, often the more experienced and specialized clinicians lack this skill and the newest registrars seem more comfortable. This may be due to the greater focus on communication skills in medical training today and the fact we are doing a better job at keeping patients alive for longer creating situations older consultants are less accustomed to. Near the start of my third year as a doctor my team was faced with making a difficult decision. A patient in her 50s with severe learning disabilities was admitted to the ward. She had not been eating or drinking leading to dehydration. There was a history of a gradual decline over months with several admissions for similar problems. She would be given intravenous fluids and then discharged. My consultant reviewed and recognized that her decline was likely due to progression of her underlying condition and that her swallow was now compromised. She also had signs of pseudo-obstruction on a CT scan of the abdomen. In order to keep her alive we would need to perform a procedure and place a device that have their own inherent risks. The consultant felt this was inappropriate in a patient whose baseline status was that she was unable to express herself and was wheelchair bound needing hoisting. The best option was for her to have palliative care, as although her condition was temporarily reversible, her underlying condition was not. This is understandably a difficult decision to make and even more difficult to communicate to the family of this patient. With the consultant’s schedule being full and with no registrar available, the responsibility fell upon me. This was the first time I was the most senior person available on the team, and I had never truly had such a conversation before. However I felt my training had equipped me with the necessary skills to try. I sat down with the family and had the conversation. It went surprisingly well for a first time. I managed to handle their questions. They were happy with how it went and I realized later that it did not matter about my seniority within my team. What mattered was the fact I was sympathetic and empathic. This had a far greater impact, and the family left feeling positive out of what was a very negative conversa-
tion. We agreed the patient should go to a hospice for further care. Several days later I was told I needed to attend a meeting with the family again as the most senior available clinician at the time. I entered the room to unexpectedly find at least 10 people in the room. It felt like 20. Members from the home the patient resided in before were there, including the community dietician, speech and language therapists, and members of the learning disability safeguarding team and nursing staff. The meeting began by asking me to explain the clinical decision making process. I sensed much animosity in the room with all eyes fixed on me as if I were in a court of law being asked to explain why as doctors we are not helping this patient and sentencing her to death. I explained the situation and it was met with much resistance. I remained patient and repeatedly addressed their concerns. In the end I realized there was only one way to help them understand. I asked the speech and language therapists if they thought her underlying swallowing problem was reversible. They agreed no. I asked the dietician if she thought with the patient’s current swallowing ability her intake would be enough to support her. She agreed no. I explained I had been through this with the family and that options were limited. I then had to leave the meeting to attend to urgent matters being the only junior on a busy team. Although this was an important meeting to remain in, unfortunately staffing levels can be low in the NHS. As the patient’s physician you simply do your best within your capacity to work. With that in mind, and although the meeting may have been intimidating to me as a junior, I ensured that the patient’s sister understood the conversation and I had addressed her concerns and answered her questions. I realized that it did not matter how I felt, that this was more about what she was going through and how I could help her through it. I also realized that the problem here was that the very people that had been looking after her for years were told a decision had been made by a group of doctors who had just met her. They wanted to have their say. In the modern system of shift patterns I then left to work a set of nights. I returned to find the patient had died in hospital after a week and a half. I looked at the notes to see what had happened. Upon leaving the meeting the focus was on looking after the patient in hospital and where the most appropriate place would be for her to be looked after next. They worked on the presumption that her swallowing may improve
National Health Service, London, United Kingdom.
195
196
and that she would be able to be discharged. I realized that before leaving and in my documentation I did not stress how serious I thought the situation was to my colleagues as I had done to the family. I had not focused on the fact she may only have days to weeks to survive if her swallowing did not improve, and this is something I now regret as this may have expedited the process of discharge to a hospice. There are many learning points I have picked up from this experience but the most important is that clinicians need to have had that difficult conversation. If it was my family
PERSONAL REFLECTION
member I would hope the clinician would not shy away, for it is essential for the well-being of the patient and their family in what is an equally difficult situation for them to be in. Address correspondence to: Towhid Imam, MBBS, BSc (Hons), MRCP (UK), DGM National Health Service London, United Kingdom E-mail: [email protected]
Copyright of Journal of Palliative Medicine is the property of Mary Ann Liebert, Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
The Conversation Towhid Imam, MBBS, BSc (Hons), MRCP (UK), DGM
I
n the National Health Service (NHS) in the United Kingdom it often falls upon the general medical team to initiate difficult conversations. Some clinicians evade it. Others take it head on. Experience does not dictate how well it is held, but skill does. From my observations, often the more experienced and specialized clinicians lack this skill and the newest registrars seem more comfortable. This may be due to the greater focus on communication skills in medical training today and the fact we are doing a better job at keeping patients alive for longer creating situations older consultants are less accustomed to. Near the start of my third year as a doctor my team was faced with making a difficult decision. A patient in her 50s with severe learning disabilities was admitted to the ward. She had not been eating or drinking leading to dehydration. There was a history of a gradual decline over months with several admissions for similar problems. She would be given intravenous fluids and then discharged. My consultant reviewed and recognized that her decline was likely due to progression of her underlying condition and that her swallow was now compromised. She also had signs of pseudo-obstruction on a CT scan of the abdomen. In order to keep her alive we would need to perform a procedure and place a device that have their own inherent risks. The consultant felt this was inappropriate in a patient whose baseline status was that she was unable to express herself and was wheelchair bound needing hoisting. The best option was for her to have palliative care, as although her condition was temporarily reversible, her underlying condition was not. This is understandably a difficult decision to make and even more difficult to communicate to the family of this patient. With the consultant’s schedule being full and with no registrar available, the responsibility fell upon me. This was the first time I was the most senior person available on the team, and I had never truly had such a conversation before. However I felt my training had equipped me with the necessary skills to try. I sat down with the family and had the conversation. It went surprisingly well for a first time. I managed to handle their questions. They were happy with how it went and I realized later that it did not matter about my seniority within my team. What mattered was the fact I was sympathetic and empathic. This had a far greater impact, and the family left feeling positive out of what was a very negative conversa-
tion. We agreed the patient should go to a hospice for further care. Several days later I was told I needed to attend a meeting with the family again as the most senior available clinician at the time. I entered the room to unexpectedly find at least 10 people in the room. It felt like 20. Members from the home the patient resided in before were there, including the community dietician, speech and language therapists, and members of the learning disability safeguarding team and nursing staff. The meeting began by asking me to explain the clinical decision making process. I sensed much animosity in the room with all eyes fixed on me as if I were in a court of law being asked to explain why as doctors we are not helping this patient and sentencing her to death. I explained the situation and it was met with much resistance. I remained patient and repeatedly addressed their concerns. In the end I realized there was only one way to help them understand. I asked the speech and language therapists if they thought her underlying swallowing problem was reversible. They agreed no. I asked the dietician if she thought with the patient’s current swallowing ability her intake would be enough to support her. She agreed no. I explained I had been through this with the family and that options were limited. I then had to leave the meeting to attend to urgent matters being the only junior on a busy team. Although this was an important meeting to remain in, unfortunately staffing levels can be low in the NHS. As the patient’s physician you simply do your best within your capacity to work. With that in mind, and although the meeting may have been intimidating to me as a junior, I ensured that the patient’s sister understood the conversation and I had addressed her concerns and answered her questions. I realized that it did not matter how I felt, that this was more about what she was going through and how I could help her through it. I also realized that the problem here was that the very people that had been looking after her for years were told a decision had been made by a group of doctors who had just met her. They wanted to have their say. In the modern system of shift patterns I then left to work a set of nights. I returned to find the patient had died in hospital after a week and a half. I looked at the notes to see what had happened. Upon leaving the meeting the focus was on looking after the patient in hospital and where the most appropriate place would be for her to be looked after next. They worked on the presumption that her swallowing may improve
National Health Service, London, United Kingdom.
195
196
and that she would be able to be discharged. I realized that before leaving and in my documentation I did not stress how serious I thought the situation was to my colleagues as I had done to the family. I had not focused on the fact she may only have days to weeks to survive if her swallowing did not improve, and this is something I now regret as this may have expedited the process of discharge to a hospice. There are many learning points I have picked up from this experience but the most important is that clinicians need to have had that difficult conversation. If it was my family
PERSONAL REFLECTION
member I would hope the clinician would not shy away, for it is essential for the well-being of the patient and their family in what is an equally difficult situation for them to be in. Address correspondence to: Towhid Imam, MBBS, BSc (Hons), MRCP (UK), DGM National Health Service London, United Kingdom E-mail: [email protected]
Copyright of Journal of Palliative Medicine is the property of Mary Ann Liebert, Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
