When you are part of a terminally ill patient’s care team, helping them to talk about death and dying is an important part of your role. You will want to be positive and hopeful, but this can be challenging when you know that the patient won’t get better. There are a number of strategies that can help.
The ever-growing number and range of blogs, video diaries and books created in recent years shows there is a thirst among people who are suffering from a chronic, or terminal illness, for open and honest conversations about death and dying. And people who are involved in end of life care need to be a part of these conversations.
Death used to be something which society addressed openly. However, with medical advances and improved treatments for diseases that were previously incurable, death has gradually faded from everyday life. Invasive procedures are sometimes continued up until the very end of life.
Palliative care, with its emphasis on making the terminally ill person comfortable, and in control of their treatment, has emerged as an alternative to what some have called the ‘medicalisation’ of dying.1
As patients and carers have become more aware and open to palliative care, so too has understanding of this alternative approach gradually improved.
One of the core features of end of life care is having important conversations. Whether you are a relative, or caring for the patient in a professional capacity, it is crucial that these conversations are open and honest, always with the aim of helping patients to express their desires, feelings, fears and wishes.
It’s natural to want to try to be positive around your patients, and you might feel you are taking away hope when telling a patient they are going to die.
Similarly, you might think that telling them everything all at once is ‘ripping off the plaster’ and delivering a painful shock.
In one of the earlier guides published on end of life care, Dr Derek Doyle, a founding member of the International Association for Hospice and Palliative Care, writes that “each person, patient or carer, should have information given at the time and in the detail when it seems right for them.”
He adds: “It is certainly wrong to withhold vital information. It can be equally wrong and damaging to try to give too much at the wrong time or in the wrong way.”
This is not an easy balance to strike, and is a learning process for everyone.
Dr Liz Toy, the end of life care lead at an Exeter hospital, echoes Dr Doyle’s comments: “It’s about choosing the right time for the patient to be having those discussions.
“It is normal to struggle to raise the subject of death and dying with the patient, but the more experienced you get at these conversations, the easier it becomes, like any other clinical skill.”
Dr Toy has found that patients will often give cues or ask questions that can help you start these conversations. They might ask about a future holiday or whether they are well enough to attend a family event.
Being alert to the deeper concerns behind these questions gives you an opportunity to explore the options with the patient, as well as being able to reassure them and give them a better idea of what the future might hold. This will include encouraging them to talk to their family and friends.
She suggests a number of ways to invite patients to raise their concerns.
One is asking open and leading questions that will encourage them to talk more about their feelings, thoughts and potential anxieties.
Opening a question by saying things like, “Tell me how you’re feeling”, or asking, “What have you been thinking about?” is a gentle and reassuring way you can help patients to think about what is important to them in their remaining days or weeks.
Sometimes, nurses, families and friends can be better at picking up these cues as they will have more contact with the patient on a day-to-day basis. Patients may speak more openly to these people than they might to doctors whom they see less frequently and in less relaxed situations.
Dr Toy emphasises the importance of the whole care team, including relatives and friends, working together.
By keeping up communication with each other, and with the patient, the right people can be available to answer questions, give the right assistance, or simply be a shoulder to lean on.
Sister Elizabeth Farmer of the Little Company of Mary, worked as a MacMillan nurse in Liverpool for many years. She describes her initial approach to supporting a terminally ill patient:
“I would say something like ‘the doctor says they are going to make you comfortable. How do you envisage being comfortable?’
“If they are at all hesitant about that I would suggest that they think about it and the next time I came we could look at it. I might say ‘would it be OK to look at it with your wife, eldest daughter or friend to help with this?’ The sooner you can involve people the better.”
From these conversations, Sister Elizabeth believes you can discover what may be causing the patient pain or anxiety. And then, together with the family, begin the process of unravelling the problem.
“It’s all about bringing about the unity of the family. I find it helpful to think of this pastoral care as a little like the Trinity: You are uniting the Father (the patient), the Son (who is the family) and the Holy Spirit (who is the love between them that sometimes is fractured purely because of pain).”
Times are changing. We are returning to a time when dying should not be seen as a medical failure, but as a natural part of life.
It is something that you can play an important part in helping terminally ill people to do well, with comfort, conversation, and consolation.
Read more about palliative care.
St Benedict of Nursia (c. 480 – 543 or 547), often known as the founder of western monasticism, instructs his monks to care for the sick, writing in his Rule that to do so is to serve Christ.
He writes: ‘Before all things and above all things care is to be taken of the sick, so that they may be served in very deed as Christ Himself; for He has said: “I was sick and you visited Me”; and, “As long as you did it for one of these My least brethren, you did it for Me.”
Taken from Chapter 36, The Rule of St Benedict