Helping patients and their families come to terms with terminal illness is a difficult task. When a pleasant couple new to the area joined our practice, there was not much more to do than the standard procedures, putting those all-important quality and outcomes framework conditions and a few prescriptions onto the computer.
Not long after, one of the couple developed odd symptoms. Referrals were made and eventually a neurodegenerative disease emerged which shortened the patient’s life abruptly.
The relentless disease presented many challenges to the couple, their family, the PCT and the doctors involved.
Breaking the bad news was one of the difficult issues to resolve. We wonder if we will be met with anger or relief. When do we do it? How much information does the patient want to hear? What do the family expect us to say or (sometimes) want us not to say to their loved one?
There is always the fear for health professionals of late diagnosis and the possibility of complaints after the death of a relative.
Much has been written on how to break bad news. It is one of the most difficult parts of our job. Fear of a terminal disease or hearing there is no cure lurks in most of us.
Many patients anticipate the diagnosis. Sometimes it is easier when we are asked to tell everything. Generally I start by asking ‘How much do you want to know?’ Often, getting straight to the point is appreciated. In many cases patients are prepared for bad news and, although they fear hearing it, it is nevertheless a relief when they know there are grounds for feeling so unwell.
At this stage there is no pattern of response and helping people to come to terms with their illness is often hard.
Preparation
The immediate physical considerations involve dealing with acute symptoms and trying to achieve stability and well-being. The long-term physical symptoms then need to be discussed with the patient as openly as possible.
Research has shown pre-operative preparation for symptoms (such as pain) and problems arising postoperatively can raise the tolerance threshold.
I suspect the same principles apply to preparation for dying as they do for post-operative symptoms. Skilled intervention at this time can make the last phase of life much more dignified.
Psychological impact
There is huge variation in how we deal with bad news, influenced by nature and nurture. We all need to deal with death at some stage. What would we do if told we have only weeks to live? The classic reactions include acceptance, anger, denial or panic but not necessarily in that order.
One of the strengths of general practice is that the GP often has in-depth knowledge of the patient and their family. Anticipation of their reaction and knowing who will help and support makes the process flow.
A patient should never hear that there is nothing more to offer, as this ignores the importance of symptom management and creates feelings of abandonment. A healthcare professional who sounds confident and knowledgeable is important to inspire belief in the difficult path lying ahead.
It is useful to have a multidisciplinary team involved. The experience and involvement of other healthcare professionals is frequently key to the next stage.
Practicalities
Patients with terminal illness are quickly faced with a mass of stark practical considerations. These range from finance, property and ensuring their family will be looked after, to thinking about the sort of death they want, where they want to be and even deciding on details for their funeral.
Well-laid plans made in anticipation of death can make a very difficult situation a little easier for the patient and, as importantly, for their family.
These practical matters are outside our direct remit as healthcare professionals, however patients look to us for help and support in all areas.
It is important not to be too practical or matter of fact. Checklists are not the right way forward for everyone. They can automate and sterilise the process.
A better approach may be to cover the issues in a more holistic and subtle way. It can help to have specific sources of further information available to direct patients to, especially when they find it hard to discuss the future.
Sources of information
Identifying appropriate sources of practical information is more difficult. Much of the information available relates only to specific matters. There are few detailed guides available that address all aspects of this very difficult subject.
The government produces some practical and well-written information on paper and online at www.direct.gov.uk. A number of local authorities are following suit.
Likewise, there are many charities producing helpful information; perhaps the Macmillan Cancer Support Trust is most well known (www.macmillan.org.uk).
There is a new resource called Lasting Post (www.lastingpost.com). Several years ago Chantal Rickards’ mother became ill and eventually died. She left few instructions or indications of her wishes after death. Her family found themselves facing endless practical decisions at a time when they wanted to come to terms with their loss. Realising there was no comprehensive and user- friendly source of information available, they developed this website. The feedback so far has been very positive.
Grieving
The grieving process touches us all at different times and in different ways. It is very hard to predict when or how it will occur, and it is even harder to control our reaction to bad news.
Managing as many of the uncertainties as possible is one way of influencing the last phase of our lives. What was once a taboo subject is now more freely discussed, and from my relatively short career in general practice I cannot encourage people strongly enough to try to look at some of the issues involved long before they will be needed.
Dr Morgan is a GP in Wimbourne, Dorset
Declaration of interest: Dr Morgan is currently part of the team contributing to Lasting Post. He is not paid to contribute to the website.