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Dealing with the dying |
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In this article Kathy Myers, locum consultant in Palliative Care at the Mildmay Hospital, discusses the difficulties of caring for terminally ill patients, and offers a Christian response.
Death is one of the last great taboos in our society. Surrounded by images of death in the media, modern western society can make it all too easy to insulate ourselves from the reality of death in our own lives and to be unprepared to deal with it 'in the flesh'. Deaths now occur more frequently in busy hospitals than in homes and I know that I was not unusual in having never encountered a dying person before becoming a medical student.
I chose to train in Palliative Medicine because of the complex and challenging issues that surround patients who are dying, and their families and professional carers. It's been my privilege to have been involved with many patients, largely with cancer or AIDS, who have been tackling these issues for themselves and who have allowed me to share in their experience. In this article, I would like to share a personal perspective on dealing with dying - both the nature of the challenges and ways that I've found it helpful to cope as a Christian doctor.
Difficulties for dying patients and their families
Each person's death has effects on those around them to varying degrees, whether they are family, friends or professional carers, like the ripples on a pond spreading outwards. Dying is seldom an isolated process. John Donne's famous words usually hold true: 'No man is an island'. As well as caring for the patient, good palliative care, (which should be the practice of every doctor, not just the 'experts'), seeks to be aware of those around the dying person and to support them as far as possible.
Often dying is straight-forward from a medical and nursing point of view, with patients and families needing no specialist care. Sometimes, however, it can present huge and distressing challenges. Dame Cicely Saunders who established St Christopher's Hospice and much of the modern hospice movement in the UK, used the term 'total pain' to describe how dying can sometimes be. Patients may experience pain because of physical symptoms or as a result of psychological, social or spiritual issues.
Physical symptoms
Physical symptoms may be caused by the disease or its treatment, or may be related to increasing dependency and weakness.
Psychological issues
Dying forces a series of losses onto many patients and is a process of constant change and uncertainty. The result can be anxiety, insecurity and fear. Coping mechanisms can be varied; examples are anger, denial, bargaining, humour and depression. Some patients find it difficult to talk about these issues because of physical or emotional exhaustion or for cultural reasons: they may never have been used to or had permission to talk about close personal and emotional issues previously. Families and friends may have similar anxieties and fears as they face the loss of the one they love and the prospect of life without them. In addition there may be feelings of helplessness.
Social issues
Dying can bring financial worries and force painful decisions on some (who will care for my children when I'm gone?) as well as domestic problems (who will do the shopping and the laundry) and isolation from friends and family.
Spiritual issues
Many who have gone through their lives relatively unconcerned about 'ultimate questions' find that dying poses these questions in a way that cannot be comfortably avoided. For some, facing these questions may challenge all the beliefs they previously held about life. Others may appear relatively unconcerned about big 'meaning of life' issues, but have real difficulties in dealing with 'unfinished business' - perhaps guilt over a broken relationship where there is a need for forgiveness and reconciliation, perhaps the need to say thank you or goodbye. Added to these can be the tension of wanting to live but preparing to die and the ever-present pressures of time and uncertainty.
Difficulties for health professionals
I doubt if any health professional who deals with dying patients on a frequent basis would say that it is an easy or painless thing to. Rather, a whole range of emotions may be provoked in us: helplessness, distressing reminders of previous personal bereavements in our own lives, anger and frustration ('why this person? why like this?'), feelings that we or 'medicine' generally have failed the patient, fear of dying ourselves and reminders of our own mortality and the 'eternal' questions it poses. It's been my experience that failure to deal with these issues will eventually have one of two outcomes.
The first is that we develop a range of unhelpful attitudes or behaviours. It's often easier to identify these in colleagues than in ourselves! Perhaps we develop a rather 'stiff upper lip', remote attitude to patients, hiding behind our white coats and never admitting to anyone that their situations are having an emotional impact on us. Perhaps we avoid dying patients altogether if we can, or we stand dutifully but awkwardly at the end of the bed, not knowing what to say, resorting to technical language, avoiding eye contact and communicating embarrassment and 'there's really nothing else I can do', before moving swiftly on. Perhaps we genuinely care and give time and effort to dying patients but then avoid our feelings and the wider issues by resorting to black humour, alcohol or drugs.
The second happens less frequently but can be devastating: we may think we're managing well when a particular patient's death suddenly 'takes the top off' our suppressed emotions and we become totally overwhelmed. This happened to me when I was eighteen months into my specialist training after clerking a young woman with advanced sarcoma. She had had extensive surgery which had disfigured and disabled her and was being very sick because of aggressive chemotherapy. She showed me a photograph of herself nine months previously before diagnosis and the contrast was completely staggering. That evening I remember feeling totally overcome with anger and sorrow, not just because of her particular situation but because of all the previous patients I had been involved with too - death seemed so unjust and awful, God so far away and uninvolved, my efforts so inadequate and futile. It was an experience that prompted me to go away and read and reflect about the whole question of suffering and death and to face things about myself that I'd been avoiding (never an easy thing to do!). I'm certain however that God has used this graciously to equip me to carry the burden of others' suffering and death more lightly, though no less carefully.
How to help and survive
Two things spring to mind when I think back to doctors who have inspired me in the care of the dying. The first is that they were invariably excellent physicians, skilled in diagnosis, medical management and teamwork. The second is that they had genuine respect for the dying and treated them with dignity, care and patience. In return, patients trusted and confided in them. We don't need specialist qualifications to sit with a dying person to listen or to share the silence. What we do need is the willingness to give our time and the courage to be human and compassionate. What we often lack, however, is not good intentions but confidence. The suggestions that follow are things that I've found invaluable in my own practice in giving me confidence.
- Learn the basics of palliative medicine and know how to access specialist help
There are a number of excellent short textbooks that deal with symptom control and the psychological, social and spiritual issues relevant to the care of the dying. One of the best, written specifically for medical students is by Twycross.[1] Having a junior doctor who knows the basic principles of prescribing analgesia, preventing constipation or managing nausea and vomiting and who takes these issues seriously and attends to the detail can make a huge difference to patients. For the dying especially, a few days spent in hospital in uncontrolled pain may represent a large proportion of their remaining life. We owe it to them not to waste their time.
If we feel out of our depth there is invariably someone in the hospital or local community who will be happy to advise. It's worth finding out early in any job the name of the consultant in palliative medicine or nurse specialist for the hospital and how to contact them. This information is usually available through the ward staff or the nearest hospice. Many hospices offer 24 hour telephone support so there's always someone to talk through difficulties with, even in the middle of the night.
- Be confident about communication skills
Some people are naturally better than others at communicating, but we all have something to learn that will improve our practice. Again, a number of excellent, accessible books have been written (Buckman[2]; Faulkner and Maguire[3]). Simple measures such as drawing the curtains or moving into a side room to provide more privacy or the way we position our chair and our body language can all be just as important as the words we say in conveying that we are taking the patient seriously and really wanting to listen to them. Reading about ways of breaking bad news or handling difficult questions can help a lot but the best way to learn is by watching someone with good communication skills in action. Don't be afraid to ask skilled consultants or senior nursing staff if you might accompany them when they conduct such interviews. If you see an interview handled clumsily, try to work out why and what would have made it more effective. Run through scenarios in your head or get together with friends and role play - 'what would I do if a patient said...'.
- Know what the Bible says about suffering and death
Others have written about suffering far more eloquently and extensively than I am able to (eg Wyatt[4]) and the questions many of us have do not have easy sound-bite answers. Suffering is one of the greatest mysteries, one which human intellectual and scientific advancement will never satisfactorily resolve, largely because, I am convinced, the answers we seek are caught up in the very nature and being of God himself. Christianity is full of paradoxes and mysteries that do not always sit comfortably in the minds of modern men and women used to rationalist, reductionist ways of thinking. It is a mystery that we are able to know the unknowable God of eternity. It is both mystery and paradox that this eternal God entered into time to become human and, on the cross, took on the full extent of human sinfulness, suffering and death.
Studying these things can be a bit like doing a difficult jigsaw with some of the pieces missing. It takes time, can be frustrating and often needs faith, based on what we can see, to imagine the whole picture. The Bible does not always give neatly packaged, conveniently spelt out answers but it does have important things to say about suffering and death. I have found Don Carson's book, 'How Long O Lord?'[5] and studying the letter to the Romans particularly helpful. I would strongly recommend investing a few days' holiday somewhere quiet and still to grapple with them.
The 'biography' of suffering and death spans the Bible. Both are 'born' in Genesis 3. Proud rebellion causes the whole of creation to be blighted and Adam and Eve to be cursed and cut off from the tree of life (Gn 3:22-24). In other words they become mortal in a world where suffering is now part of the infrastructure. The link between sin, suffering and death continues throughout the Old Testament until God himself intervenes through his Son. In Jesus, God not only shared in the experience of human life and death, but also took the punishment for our sin once and for all by dying in our place on the cross. God proved that he'd dealt with sin effectively by raising Jesus from the dead. Once sin is dealt with, death can have no power over us (Rom 5:12-21). The new order which then becomes possible, which is free from all sin, suffering, pain and death is gloriously described in Revelation 21: 1-4.
For me, the strands of these truths have over time begun to wind themselves together in a way that has made it easier to hold in perspective the problem of suffering and death. I still have questions and have had to learn to trust God for the answers to these and be content to accept that we are caught up with mysteries that our minds will never fully grasp this side of heaven. In the day-to-day world of dealing with patients and families, however, there is another strand that I've found to be crucial. I am convinced that it is in knowing God himself, not just in knowing about him and what he has done, that the seeds of real comfort and meaning lie when we face suffering and death. The one who has shared the experience of suffering and death and transcended them is the one who longs to be in loving relationship with us and to be present with us in our pain. 'Suffering is not a question that demands an answer; it is not a problem that demands a solution; it is a mystery that demands a presence' (anonymous, quoted from John Wyatt's book[4]). It is both because of the hope that we have and God's presence with us that we are more able to stand alongside others in their suffering.
- Be kind to yourself
Whichever medical specialty we work in, empathising with patients, standing alongside them and giving our time and effort can be costly. We need to be kind to ourselves if we are to survive. I've found the following to be particularly important:
Honesty: admitting to myself and sometimes to a colleague I trust when I'm feeling particularly stressed, tired or affected by a patient and seeking support before the situation gets out of hand.
Realistic boundaries: being a compassionate doctor does not mean always being all things to all patients. Acknowledging the roles and contributions of other members of the health care team is important here. There will be times when it is more appropriate for one of them to help the patient.
Sources of support and encouragement: colleagues and spouses are not always the most appropriate people to share burdens with. It can be particularly helpful to have a friend or mentor from outside our work situation who will pray with us and for us. Keeping in contact with a church congregation or a previous church minister if our work takes us to a different area for a time can be particularly helpful.
Time and space to stay human: we all need time and activities that re-create us physically and emotionally (ie we all need to have fun!). Few medics need advice on how to do this, but we perhaps sometimes need to give ourselves permission to do it, and to see it as important if we are to stay fruitful in our working lives.
- Personal safety valves
Every doctor will have particular ways that they keep themselves sane in their work. The following are ways that I've found useful in avoiding some of the pitfalls mentioned earlier:
Prayer: I try to pray briefly and remind myself of God's presence before I go to see every patient (an extra minute's pause over the notes often suffices), and often during particularly difficult interviews. I pray for insight into God's heart for that person, for an understanding of the things that are really important to them, and for wisdom, discernment and the right words in knowing how to respond. I tend to ask most patients anyway whether they have a faith that helps them when they are facing difficulties in their lives.[6] Most will talk readily, but opportunities to pray with patients have only come when I've silently asked for God's leading.
I also try to remember to pray when I'm feeling particularly sad or battered and bruised by the day's work. In the words of the hymn: 'Oh what peace we often forfeit, oh what needless pain we share, all because we do not carry everything to God in prayer'. God longs to hear our prayers and lift our burdens. I often pray by imagining that I am piling unanswered questions, frustrations, hurts and exhaustion one by one into a big box at the foot of the cross, to have Jesus close the lid and carry it away himself.
Moving on: I try to say a conscious 'goodbye' to patients who have died. Sometimes it's possible to spend a few minutes with them after death. Sometimes I reflect when dictating a summary from their notes. Whichever, I find that by remembering for a moment and commending that person to God's mercy I find that I can more easily 're-locate' them in my mind and move on to the next ones that need help.
Reaffirming life: Another paradox and tension I've often experienced is that though we may feel hemmed in by suffering and death at times, we are also in the middle of life with all its possibilities and joys. Praising God and reflecting on him in these circumstances is a great way of keeping the balance (though often such praise can be a sacrifice as we will it rather than feel it - Psalm 42 is a good example). My favourite ways of celebrating life usually involve my two little boys - a couple of hours with them on the local farm or in the sandpit is a great restorer of perspective!
Summary
Dealing with the dying may fill us at times with trepidation and doubts in our own abilities to cope. The dying are, however, people like us. We need not be afraid to be with them, indeed it is our great privilege to serve them. So let's equip ourselves clinically and spiritually to serve them to the best of our abilities, knowing that our Lord has not only gone before but also stands alongside us.
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Further readingCasson H. Dying: the greatest adventure of my life. 5th edition. London: CMF, 1999 |
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References
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