Being diagnosed with a terminal illness can be devastating for both the person involved and those close to them. But what is the best way for doctors and other health professionals to break this news? In this blog, Dr Paul Perkins, Chief Medical Director at Sue Ryder and Consultant in Palliative Medicine, discusses human connection and why specific personal responses to a patient's illness is so important.
It's a day we all fear, being told that you only have a few months left. That your illness is terminal and you do not have long to live. For some, it will come out of the blue and be completely unexpected. For others, it may be something which they knew may come after a long period battling an illness.
What remains true for all is the shattering effect this news will have on the person being told, as well as their family and friends around them.
It is commonplace for doctors to give precise timelines for how long a patient has to live. A year, six months, three months. A concrete time frame. But, is this the best way to break such awful news?
Often, doctors and health professionals cannot provide accurate timescales for a person's terminal illness and so stating a certain time period to the patient isn't realistic, even if the person wants a definitive answer.
It's understandable that they do, given the severity of the news and the sudden realisation that they will need to plan their last days, but it may not be the most effective way for doctors to help them deal with their specific situation and plan their end of life care.
It's really important to work out what kind of person you have in front of you
Dr Paul Perkins, Chief Medical Director at Sue Ryder and Consultant in Palliative Medicine, thinks that a flexible approach is required, in which the person's specific needs and requirements are taken into account, adapting the response and advice to the patient specifically.
"It's really important to work out what kind of person you have in front of you. The majority of people wants lots of information, but some may choose to cope with an illness by not talking about it. In some cases, they might want you to talk to a family member instead which you could do with the patient's permission,"
"When I am with patients, I tell people that the evidence is that doctors are often bad at guessing but if they want me to give them an estimate I will do my best."
"There has been research done to try and help us be better at guessing but so far a lot of doctors rely on their experience to try and give an answer. Sometimes for the patient they will want to know about an important date, for example, 'Will I still be here at Christmas?'"
Planning for the worst, but hoping for the best
Regarding the best way to respond to someone's desire for clarity and a more exact time frame, Dr Perkins explains there is no right answer.
"There is no right way to answer the question; you need to pitch it for that patient. Best and worst case scenario seems like a good approach. At Sue Ryder, we talk to people about planning for the worst, but hoping for the best."
It's also important to plan your care and try to live the best life you can with friends and family, even if that time is limited.
"Do your planning for your end of life care now, while you are well, and then get on with living. I would recommend Sue Ryder’s 'A Better Death Guide', for some practical tips about how to talk to loved ones about this difficult subject, and what plans you can make which will make things easier for patients and their loved ones."
That human connection is so important
Informing patients and their families of the news can, understandably, be very hard for doctors or nurses. Which is why there is better training and guidance in this area.
"There is increasing emphasis on communication skills training and much more of it for medical students than ever before. It is difficult, it should feel difficult. It shouldn't be easy to tell someone that they don't have long to live."
But the support provided by healthcare professionals for people affected by a terminal illness is a core and vital part of allowing the patient to live a full life while planning for what lies ahead, for themselves and their loved ones.
"That human connection is so important. Sometimes the medicines can't do a lot to help people, but you as a human being can make a difference."
A small insight
There are difficulties in larger hospitals, where everything moves at such a fast pace and there are so many patients to look after. Finding the time to talk at length to people with terminal illnesses or their families can be a challenge, and as Dr Perkins explains, can be a challenge for the staff themselves.
"Doctors and nurses who are doing this every day need to find ways of coping with this, so that it doesn't take it toll."
"I feel very lucky to work in palliative medicine at Sue Ryder. I can have a small insight into what it feels like to be dying without being ill yet myself. People working at our hospices tell me that the work has changed how they live their lives."