Josefine Speyer is a psychotherapist and a co-director of the Natural Death Centre. She was formerly a director of the Befriending Network in London, UK, which trains volunteer Befrienders who visit those who are critically ill at home. The following are adapted extracts from a talk given by Josefine Speyer to hospital and hospice nurses at the Centre for Cancer and Palliative Care Studies at the Royal Marsden Hospital in London SW3. It is aimed, however, at a wider group: the patient; the carer, family and friends; nurses and others in the medical team and the volunteer Befriender.
Working with people who have been diagnosed with a life-threatening illness brings this reality into focus: not only you, the patient, is mortal and going to die one day, but so am I, your nurse and member of the medical team.
All too often professionals fall into the 'I / you' trap: "You are ill and dreadful things are happening to you, I am healthy and well and able to help you." This promotes the fantasy that we are not ultimately in the same boat: ie "dreadful things are happening to you and therefore they are not happening to me" this could even lead to: "I need you, so that dreadful things are not happening to me", "you are the carrier of these dreadful feelings for me".
The patient's defence against anxiety or terror can at times lead to the carer or helper coming to feel he or she is the carrier of the dreadful feelings for the patient.
A trap the patient can fall into is: "I am helpless and you know how to make me better."
These forms of defence are commonly called 'splitting' because they are an attempt to split what we perceive as the good and the bad from each other in order for one to be identified as either all good and the other all bad. It feels safer that way. But reality is not like that. In reality we need to deal with very painful and uncomfortable feelings within ourselves.
The fact that both you and I will die and that therefore we are in the same boat, is very difficult to take on board. This means we both feel and experience varying degrees of anxiety at times.
We can never be sure which one of us will die first, though as the non-patient, in the here-and-now, it is easy to assume that the patient will die first and therefore I (the nurse, doctor, volunteer or friend) will be spared.
What we ourselves dread so much or dread most is happening to someone else - just as in the movies or when we read the news.
This attitude prevents us from consciously taking on board and dealing with the very basic reality of our own mortality and our need to consider our own death. This in turn would have offered us the opportunity to consider our lives and to live now in such a way that one day we can die without regrets and at peace with ourselves and the way we have lived.
A healthy defence in my opinion would be where a person - after having shut down completely for a time as part of a shock reaction in order to regain their inner balance - is opening up gradually and just a little; just so much as they are able to take in of the reality and facts of what has happened and as much as they are able to deal with emotionally.
Not knowing when we will die means that we are living with tremendous uncertainty. The way most people deal with this uncertainty is to suppress this awareness on the day to day level to such a degree that death stops being a personal reality for them. It also leaves people unprepared for when the inevitable crisis does occur, which means they are at a loss emotionally and psychologically. They don't know what they think or feel, what to say or do. I think it is fair to say that this includes most of us. Being at such a total loss we are in desperate need of some protection, some form of defence, and the defence most of us then choose is aimed at restoring ourselves to what we were before we so painfully became exposed to this lack in ourselves.
But rather than retreating and shutting down to the same extent as before, this could be an opportunity to learn something and to grow in such a way that it will give us real protection, real support the next time we are confronted with death. This is not the easy way: it is about making a deeper connection with life, one that does not exclude loss or death.
I believe that for everyone working in palliative care or with people who are living with a life-threatening illness, the issue of our own death stands at the centre of our work; and I believe that we have chosen this work because we have something to gain, to learn from this situation, from our patients, through our work.
1. Imagine a loss has occurred. This could be the loss of a relationship for instance, the loss of a job, or the diagnosis of a terminal illness. We are distressed. There is a wish that what has been lost will be restored to us and that therefore this present suffering will be brought to a swift end and all will be well.
2. Then there is the pain and suffering we go through when we realise that the hoped-for restoration may not be possible. We may feel anger at other people involved, at ourselves, at the situation, at what happened in the past or did not happen or because of other factors. There may be feelings of guilt, shame, sadness and longing - perhaps some kind of bargaining, that if I am good by doing x, y or z, what is lost will be restored to me.
3. As this continues, gradually there may be a recognition of the fact that the hope to regain what has been lost is in vain; a gradual acceptance of the new reality, a recollection of past memories, good and the bad, recognising and accepting that it is in the past. Accepting what is happening and letting go of holding on, letting go of clinging and bargaining.
4. We begin dealing with the new reality, including the natural sadness and pain at the loss, along with gratitude for the good things that have been and forgiveness for any hurt or suffering inflicted; and finding new hope, through having a new and different sense of identity.
5. We may have a sense of power restored, of no longer feeling a victim of circumstance, but of taking an active interest in life as it is now (the present life situation) - feeling that "I am good and I have something to offer and to give" and "I can allow others to give to me and this is a good experience".
Through grieving in a healthy way we can make a deeper connection to life. We feel that our life has had meaning and that we are of value and have something of value to offer others.
Grief starts at the point of diagnosis of a serious illness. In the case of a diagnosis of a very serious illness such as cancer or any other life-threatening or incurable disease, the threat is far more dramatic and the anxiety the patient is experiencing is far greater. Therefore the grief reaction will be far more serious.
In the above table, you see what Elizabeth Kübler-Ross called the Stages of Dying, Colin Murray Parkes called the Phases of Mourning and John Bowlby called Possible Responses (to a diagnosis of a very serious or terminal illness). All these reactions mentioned are describing grief reactions or reactions to loss.
All three of them start with denial or shock and numbness, "No, not me!", "This can't be true!", as the first grief reaction. This means they see denial as an integral part of the grief process. When you look further at this you see that all three of them agree that there are various stages we go through psychologically in order to come to terms with loss. Ideally, the full cycle is completed and the person has grown through this painful experience. They are ultimately changed by this in a positive way - positive in that a deeper more meaningful connection with oneself and the world has been established: We have attained some wisdom, some insight that benefits us and others.
A resolved grief means being open to life in a new way, with an open mind and open heart. As William Worden says in his 'Four Tasks of Mourning': we are able to adjust to the new situation.
Nevertheless we should be aiming to hold both these possibilities in mind, in order to be prepared and to be able to be present and able to respond in a caring way to whatever happens to the patient. In general terms this entails recognising that in the midst of life we are in death and that in the midst of death we are in life.
Is a good death when everyone, the person dying and everyone involved with them, is at peace? How does one complete one's life in a 'good' way?
"The art of living well and the art of dying well are one."
Epicurus
"The wise review their lives daily in the light of death. It is a great art to die well and to be learned by men in health."
The Rules and Exercises of Holy Dying, a 17th Century English book of death
"Whilst I thought I was learning how to live, I have been learning how to die."
Leonardo da Vinci
We all need to feel loved and to feel good about ourselves.
Shame about what we naturally feel can make it difficult to express ourselves or to accept help. People need permission, or at least encouragement, to acknowledge that what they feel or need is natural and that it is normal, acceptable and sane for them to feel the way they do.
Let us now consider the psychological dimension for the ill person, the family, friends or carer, the nurses or medical team, the volunteer Befriender and how this can affect each one of these people. I will do this by considering some of their circumstances.
What all this brings into focus for the patient are questions such as:
What kind of life have I lived? How have I lived? What kind of person am I? What kind of relationships do I have? What is important for me now?
How successfully the ill person is able to cope depends on many factors. Is this a person who is isolated with little support? Or a person with many loving friends and family who are willing to be there for them? Is this someone who is open-minded, able to communicate well and in a meaningful way? Or a bitter, angry person, perhaps somebody who is not able to communicate well?
All the underlying tensions and difficulties of their life do become more apparent. How are they able to deal with the reality of their situation?
Do they have a spiritual belief that they are willing to talk about? Do they have a way of dealing with anxiety that others can support them with?
It is said we die as we have lived. That could mean that if we have avoided talking about our inner feelings all our lives, now may not be the time to expect us to open up - "bedside conversions don't happen". It is also true, however, that under extreme stress people can sometimes summon extraordinary strengths they did not know they had.
In this way, a person may spontaneously display qualities that surprise those surrounding them - these qualities can vary from great courage, inner calm and serenity, warmth and humour or great spiritual belief, to making peace with their family and themselves and generally being an inspiration to those around them.
Or it can also go the other way: there can be a severe social and emotional withdrawal and a deep depression, with terrible mood swings and a rage and anger which continue until the end.
It is obviously much easier to support or work with somebody in the former category. In the latter, rather extreme case, it can be very difficult for anyone to be with that person, because they are displaying their distress in this very unpleasant way. This can exacerbate the loneliness, fear and isolation that they are already experiencing.
In most cases, the patient will react in ways that are somewhere between those two extremes.
The patient's role is very often a passive one, with feelings of helplessness and an increasing sense of lack of control as well as the experience of numerous losses over time. Therefore it is very important for the ill person to have control of those aspects where they can be in control.
Let us just consider for a moment what some of these losses are:
Losing their physical health and vigour, the physical ability to do certain things, losing self-esteem, physical beauty, parts of their body, independence, job or familiar routine, the social life they had and relationships that don't stand the strain of the patient's situation.
Then there is the loss of the ability to enjoy everyday activities:
Reading, gardening, going for country walks, dancing, sitting in a cafe and drinking cappuccino, going shopping and choosing what to buy.
And the loss of:
Concentration, sleep, the status that work gave them and everything that came with that - a social life, a social role, income, financial security, control in many areas.
Sometimes the family breaks up, the partner leaves.
The patient suffers loss of identity, the sense of self changes because so much of this is tied up with what we do and how other people treat us.
All the person is left with is: their memories, the satisfaction of a life well lived, the love they were able to give and receive, the knowledge of their achievements and of what they are leaving behind, the love they are able to give and receive now, their regrets, sorrow or anger at a life not fully lived or of love not expressed or received, their guilt at harm caused, their shame, their sadness at what has not yet been achieved - and will never happen because time has run out.
How the carer is affected by - and able to deal with - the situation depends on a variety of factors:
What has been the history of their relationship? Is the patient's life expectancy long or short? How much unfinished business is there between the carer and the patient and how, if at all, are they dealing with it? Are they able to talk about their difficulties, anxieties and fears? Are they open about their situation and about discussing differing needs? Are they resourceful and able to accept help? Are they able to talk about their feelings of grief, about the future, about death, about funeral arrangements and other practical issues?
Does the carer continue to hold down a job, have a social life and get enough rest? Does the carer consider life after the patient has died?
Many times the carer has put their life on hold to look after the patient, and everything centres around the patient. They live just day to day. The carer can become socially isolated, lose self-esteem or become depressed, have financial worries; he or she may not be able to communicate very well and may not take care of themselves very well. All this may contribute to the carer feeling exhausted and getting ill themselves and also to tensions in the household and to difficulties between the carer and the patient.
The carer may well need someone to talk to or need support for themselves which they are not getting or cannot ask for. If the carer and the patient are not able to be open with each other, they can both feel very isolated - which exacerbates their fears and leads to more tension and stress.
But if the nurse is able to create an atmosphere of trust, the patient will intuitively sense that the nurse is open to listening in a compassionate and caring way and then the nurse can be of very great help. All that is needed is for the nurse to take the time to be there and to listen. No answers are needed and very often there are no solutions anyway. So if the patient can say what is on their mind that is the best way for the nurse to be able to give emotional and spiritual support to the patient. It is important to remember that the patient is above all a person and needs to be treated as such. If a nurse becomes aware that a patient needs emotional help, it is good practice to share this with the team so that a counsellor can perhaps be arranged to see the patient.
As professionals it is very important that we take care of ourselves and recognise our own needs and limits. Only if we are able to accept our own vulnerability and need for support will we be able to offer support to someone else who is feeling vulnerable.
It is a very human response to feel vulnerable and I think it is important to allow oneself to be touched by the pain of the patient. We should put ourselves into the place of the patient and ask ourselves, what would I feel? What would I most wish for from those attending to me?
Being a professional 'helper' can be a problem in palliative care because we cannot make it better. In fact some of the main issues for the patient, the nurse and others are these feelings of helplessness and lack of control. This can also bring up a lot of feelings in the nurse which actually 'belong to' the patient but which have been taken on unconsciously. It is important to recognise these feelings as an unconscious communication from the patient by talking and thinking about them with the team. In this way we gain a deeper understanding of our patient.
It is important not to take the patient's problems home and to have a life outside work that is fulfilling; and to have compassion for oneself and for others on the team. We must not be coming with our own unconscious agenda of unresolved grief to this work. We would be doing more harm than good. In any case our own grief will be stimulated over and over through our work and we need to be conscious of this and accept it. We need to learn not to be afraid of meeting our own pain. We should practise being with our fear of feeling and being helpless. Being gentle with ourselves, accepting what we feel, we can be gentle with the patient and accept and stay with whatever it is they are going through at the time.
In palliative care, helping is not so much helping by doing, but rather helping by being. It is such a privilege that a patient will confide in us and discuss their feelings about death or dying or other intimate concerns. This intimacy is very rewarding.
Sharing with others on such a profound level and discussing their different experiences creates a great intimacy and bond in the group.
We look at grief and loss, conducting a positive life review and how to deal with unfinished business. Using a guided visualisation, volunteers imagine their own needs if they were terminally ill, from the point of diagnosis until death; and discussing the needs and concerns people may have at the various stages of this journey. The trainees brainstorm subjects such as what could be signs of stress, how to deal with stress, how to prevent it, how to support themselves and establish boundaries for Befrienders.
Experienced Befrienders come in to the training groups to speak of their experiences of befriending and to answer questions. We have also had a person with a life-threatening illness come and talk about their experience; and a presentation about palliative care by a Macmillan nurse or by a palliative care specialist.
The roles our Befrienders are asked to take vary. The emphasis is on giving moral support to the ill person, being there every week for two to three hours at the same time, reliably. This regularity and continuity develop a sense of safety and trust which allows for sharing on a more profound level and for the ill person to speak of those things which are frightening or difficult. It is often easier for the ill person to speak about these things with the Befriender because they are not part of their social circle and what is shared is kept confidential.
Our oldest Befriender is 70-years-old the youngest is 23. The oldest person befriended has been 87 and the youngest 21. The Befriender and the patients come from various religious and cultural backgrounds. All of our Befrienders have in common that they are open-minded, sensitive and caring and have very good listening skills. At the moment (June 1999) we have 13 women and 6 men as London Befrienders.
The Befriender is there as a fellow human being to provide company, ease isolation and give the carer a break. There is principally nothing the Befriender has to do, the emphasis is on being there. But in many cases the Befriender can provide more than that - for instance, by being a listening ear for the exhausted carer, by playing with the children or by helping them to tidy up in their bedroom whilst their ill parent is receiving treatment from the nurse; or in another case by phoning the local authority to help sort out difficulties with the home help, or by phoning the doctor on behalf of the patient to help sort out a problem or by phoning the housing association about repairs that have not been completed.
Many of our patients have cancer - but not all. Many of our patients live alone and have no family or no family near them.
When his Befriender came to see him they often went to a local patisserie. John was a very private person, who would not easily talk about his worries or feelings and never for very long. But on occasion, when he needed help he was able to ask for it and to accept it. As he was very touchy about showing his vulnerability, these were particularly moving moments for his Befriender. Having a sense of control was very important for John all his life and particularly during his illness. Accepting his feelings of helplessness or need for help was a big step for him, which over time he became less defensive about.
The following week Bill was very buoyant in spirit and feeling physically better. However he expressed great regret at having said so much to the Befriender. It was clear that he felt great discomfort at having been so open. That visit Bill talked nonstop, in a nervous sort of way, about nothing in particular. The Befriender was aware that he felt pushed away by Bill, as though Bill was blaming him for his own openness the previous time, and was very uncomfortable sitting with that.
The next visit Bill again spoke on a deeply meaningful level, this time regarding current concerns about his future, financial worries and his impending hospital appointments for checkups. Bill said that he was feeling in a bad mood. He mentioned the death of the lady in the flat opposite his. He had witnessed the flat being emptied and said that perfectly good furniture was broken up and thrown in the skip. This made him wonder what life was all about when all one's life one spends building a home for oneself, only for it to get thrown away like that at the end.
It seemed that Bill was expressing his concern of what will happen when he dies and his fear that he may not have a future, that his cancer may have progressed. He clearly wanted to open up and be known to the volunteer but at the same time was afraid of that degree of intimacy which was so unfamiliar to him.
Bill overcame his fear of intimacy and revealed himself more and more over time, though slowly and haltingly, realising that he could trust the volunteer not to judge him. The volunteer, by being accepting and understanding, was able to give Bill gentle encouragement.
Frank Ostaseski, who is director of a Zen hospice in San Francisco, says: "Facing grief together is to be open with our heart and mind and to allow our heart to be broken. A broken heart does not need to be fixed, it is rather like a split open fruit that reveals its special flavour and fruitiness. We do not need to be fixed: we are whole already."
To be able to respond to the real communication behind the apparent actions or words, we need to be mindful of the underlying dynamics of the situation.
Josefine Speyer, Co-Director, Natural Death Centre, 6 Blackstock Mews, Blackstock Road, London N4 2BT, UK (personal contact details: tel 020 7359 8391; fax 020 7354 3831; e-mail: ndc@alberyfoundation.org; Centre website: www.naturaldeath.org.uk).
The Befriending Network seeks volunteer Befrienders prepared to give up two to three hours of their time each week, with a minimum commitment of one year, to visit the homes of those who have a life-threatening illness. This work might suit trainee counsellors amongst others. The training itself takes six or seven evenings of three hours each and one full day session. Thereafter there are occasional further training sessions and regular support and supervision groups.
The Befriending Network is currently active in West London, North London and Oxfordshire, plus providing a referral service to similar organisations throughout the UK.
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