It is important to remember that you are dealing with real people with real feelings and emotions at a vulnerable time in their lives. You must remember to listen to and acknowledge their concerns, and respond in a caring and loving way with ‘gentleness and respect’.[1]
In responding to the patient’s daughter, it is essential that you listen to what she is saying, acknowledge her concerns and ascertain the basis of her worries. This request may be a plea to relieve her own distress in watching, rather than that of her dying father. I sometimes find it helpful to be honest about my own feelings by saying something like, ‘It’s hard to watch someone you love like this, isn’t it?’ This can give them permission to express and explore their underlying feelings. Be careful not to respond too quickly with glib answers. We have a great deal to learn from Job’s friends, who ‘sat on the ground with him… no one said a word to him’.[2] Silence is recognised as a useful and important communication tool.[3]
Your ultimate responsibility is to your patient and you must always act in their best interests. However, palliative care involves ‘the active total care of patients and their families’ and ‘the care of the family is an integral part of the care of the dying; a contented family increases the likelihood of a contented patient’.[4] However, you don’t have to be a specialist in palliative medicine to be able to offer good care to dying patients and their families.[5] This is an important skill to be competent in, whatever branch of medicine you eventually go into. As a Christian house officer, when you are the doctor who will be spending the most time on the wards with patients and relatives, you can have a real impact in this area of their care.
You must first assess your patient’s physical needs. You know that over the last 24 hours he has required one dose of diamorphine for pain and one dose of midazolam for restlessness; with this treatment he is settled. Initially, you can use ‘as required’ doses like this to treat his symptoms. If he is requiring regular medication for symptom control, it is worthwhile commencing a 24 hour subcutaneous syringe driver containing the total dose of drugs required over the previous 24 hours. In addition to this, you should continue with extra doses as required. Don’t be tempted to give higher doses than are required to control their physical symptoms, even if you feel pressurised by senior colleagues or relatives. The principle of double effect is one thing (that treatment given for symptom control may occasionally shorten life as a side effect), but euthanasia is a completely different issue.[6] There are many good basic palliative care texts that clearly explain symptom management in the terminal phase if you are interested.[7] Your hospital may also have its own guidelines, and if not try your palliative care team or hospital Macmillan nurse who will always be happy to advise.
Addressing the psychological, social and spiritual needs of a patient in a terminal coma is impossible. However, you can assess these needs in his family.
Offering spiritual support to a patient and his family is an integral part of palliative care. It is not something that, in my experience, occurs much in hospital. Often, the uncertainty of facing death and mortality brings the ‘meaning of life’ and ‘life after death’ into question. As Christian doctors, we have a duty to ensure holistic care of our patients and their families, which includes their spiritual care. We should get involved with this, but it’s not always easy or comfortable. If we’re not going to broach the subject, then an athieistic doctor certainly isn’t. Bernard Palmer’s question, ‘do you have a faith that helps you at a time like this?’ can be a helpful icebreaker.[8] Asking them if they pray is an alternative, and if they do you could ask if they minded if you pray for them, either on your own or with them. If this doesn’t feel comfortable for you, practise and find your own way. The first few times it always feels a bit difficult, but like learning all new skills you’ll get better with practice.
You cannot always be the answer to every problem for every patient; you are a member of a multidisciplinary team and each has their own contribution to make. ‘Few patients discuss the spiritual aspects of life and death with their doctor, most do so with another team member or with relatives and close friends’.[9] It is important to use the whole multidisciplinary team, which includes the chaplaincy. Ask if they would like a chaplain or priest to attend. Beware that it is easy to use this as an excuse not to approach the issue yourself, but remember that we will have to give account both for what we do and do not do.[10]
As Christians, we can face death knowing that it has no power over us because our sin has been dealt with and our future secured by Jesus on the cross.[11] In this knowledge, we can be different from our non-believing colleagues in the way we care for our dying patients and their grieving relatives.
Enigma 4
A 20 year old mother of two small children tells you that her last period was eight weeks ago. She and her boyfriend don’t think they can cope with a third child and request a termination of pregnancy. How will you approach this consultation? What do you need to talk about? What will you do if she doesn’t change her mind?