Facing lossBMJ 1998; 316 doi: http://dx.doi.org/10.1136/bmj.316.7143.1521 (Published 16 May 1998) Cite this as: BMJ 1998;316:1521
This is the last in a series of 10 articles dealing with the different types of loss that doctors will meet in their practice
To conclude this series, I examine some of the problems that explain why the care that is needed in situations of bereavement and loss may not be provided, and I suggest some solutions.
Losses may go unrecognised because they are concealed or avoided by those who experience them, misrepresented by caregivers, or take place very gradually
Losses are often concealed or misrepresented out of kindness, but the supposed harmful consequences of revealing the truth rarely match the harmful consequences of concealment
Men military personnel members of emergency services and doctors are often expected to inhibit grief. They are also likely to find it difficult to ask for help
Even mothers who have planned for and eagerly anticipated the birth of a child may need to grieve for the many losses that result from it
The most important thing that members of the healthcare team have to offer to those who are afraid is a relationship of trust and respect, from which they can explore the situation they face, share the feelings that arise, and review the implications of loss
Why losses may go unrecognised
Although the death of a spouse or child is a public event that seldom goes unrecognised, many other types of loss do not attract attention or support to those who suffer them. This has been called disenfranchised grief.1 It is not unusual for more than one of the reasons listed in the box to apply.
People with unrecognised losses are of particular importance to members of the healthcare professions for three reasons: their physical and mental health may be at risk; they seldom come to the notice of the usual caring agencies; and we often find out about them because of our access to confidential information that is hidden from others. In fact we may be the only people who are in a position to help.
Hidden losses arise when a relationship has been kept secret, when the ending of the relationship cannot be acknowledged, or when the loss is associated with feelings of shame or inadequacy. If the bereaved person has had a homosexual relationship that has been concealed, the death of the partner may be a great cause for grief that the survivor may not feel free to express or share. Often the relationship has been known or guessed at by others who colluded by pretending that the relationship did not exist. The loss is not admitted to by anyone: the bereaved try hard to hide any expression of grief for fear that their secret will be discovered, and others are debarred from expressing sympathy or support.
There is a lot of truth in the saying “To understand is to forgive,” and this applies to the patient as well as the doctor. People with secrets are often trying to hide from themselves—“If I don't tell anyone about it I won't have to think about it and can pretend that it is not true.” Like most forms of denial this device is seldom successful because we have to be on our guard against the danger that we are trying to avoid. Once the secret has been shared we no longer need to be on our guard against it.
Trust has to be earned: we have no right to expect our patients to trust us and often have to address this problem before attempting to deal more directly with the secrets. By reassuring patients that anything they tell us will be treated as confidential and putting our case notes aside when confidential issues are touched on, we show sensitivity and earn trust. In the end, however, it is likely to be non-verbal messages—the welcoming smile, a hand on the shoulder at the right moment, a flash of eye contact when some particularly dangerous topic has been touched on—that indicate our trustworthiness.
Why loss may go unrecognised
Hidden losses associated with shame or stigma (for example, HIV infection or mental illness)
Concealment or misrepresentation of losses by caregivers, as when caregivers conceal information from children or elderly people
Gradual losses, as when the imperceptible progression of an illness is ignored (for example, in infertility or Alzheimer's disease)
Avoided grief, as when people deny their need to grieve for social or other reasons (for example, in “macho” men after any loss or in mothers who have mixed feelings on the birth of a baby)
Problems of this kind are particularly common among people with HIV infection and other diseases that may be sexually transmitted. They are also common consequences of mental illnesses, which may be aggravated as a result of these problems.
Members of the healthcare team often have confidential information that may make us the only people who can give support to patients with such diseases. Some patients will shut themselves up at home, refuse necessary treatments, and resist attempts at rehabilitation. By criticising or browbeating them we only increase their feelings of insecurity and fear. By treating them with respect, withholding judgment, and encouraging them to believe in themselves, we stand a much better chance of helping.
Members of the healthcare professions may be the only people in a position to help people with unrecognised losses
Concealment or misrepresentation of losses by caregivers
Losses are often concealed or misrepresented out of kindness. A mother may not tell her young son that his father is dying because she wants to protect him from the pain that he will experience if he learns the truth. A nurse in a residential home for the elderly may not invite residents to attend the funeral of another resident because she thinks it will upset them. A doctor may give quite unjustified reassurance to a patient with heart disease for fear that the truth will cause the patient to drop dead.
In an important recent study, 50 people with learning disorders who were being cared for in the community and who had recently lost a parent were compared with 50 others who had not been bereaved.2 Those who had been bereaved were unlikely to have been warned of the coming death of their parent and to have been taken to visit the grave, and only half were known to have attended the funeral. They had much higher scores on measures of anxiety, depression, hyperactivity, stereotyped movements, and other indicators of distress. Despite this, most of the professional and family carers who looked after them were quite unaware of their distress and inclined to attribute their symptoms to brain damage rather than to bereavement and its secondary consequences.
Concealment of a loss often leads to bad consequences: the loss may eventually become obvious and the deception may be seen through; inaccurate information may leave the recipient ill prepared to deal with subsequent events; and an opportunity to help someone to cope with reality may have been missed. The supposed harmful consequences of revealing the truth rarely match the harmful consequences of concealment.
When a loss is very gradual or imperceptible, or the person has been born with a disfigurement or disability of which they only gradually become aware, they often succeed in ignoring or minimising the implications of the loss. So too do their family, friends, and caregivers, who may not understand that depression or other psychological symptoms are often indications that the person is becoming aware of the loss and that the time has come for someone to acknowledge the need to grieve and to support them through their grief.
The supposed harmful consequences of revealing the truth rarely match the harmful consequences of concealment
The infertile couple often deny for many years that they will never succeed in conceiving. As Bryan and Higgins put it, “Some secretly carry on hoping against all odds, if only to postpone the inevitable pain and misery of giving up hope.”3 They may not realise that their increasing irritability, their resentment of people who have had an abortion, and their loss of sexual libido are all symptoms of grief. When, eventually, they do acknowledge the true situation, each partner will grieve in an individual way and this may make it hard for them to support each other. Each may blame the other, for infertility is always assumed to be somebody's “fault.” Not only is infertility inconspicuous, it is also something about which people often feel ashamed. Infertile couples often keep their sadness to themselves and social support from friends and family is lacking. Those unable to conceive may feel jealous of those who can and friends with children may not like to draw attention to their good fortune by sympathising.
Each partner in an infertile couple will grieve in an individual way, and this may make it hard for them to support each other
Wives and husbands of people with Alzheimer's disease may be reluctant to acknowledge that they no longer recognise the person they married. Both social pressures from their families and allegiance to the spouse force them to pretend that the gross change in personality that has resulted from the disease has not impaired their relationship. Sadly, the failure to acknowledge the truth may cause them to blame the spouse for failing to be the sensitive, intelligent person he or she always was. Support and understanding may be needed if the wife or husband is to grieve for this very real loss and find a way of living with and supporting the different spouse whom they now have. When eventually the spouse dies, relief may make it hard to grieve at a time when everyone seems to expect it.
In these cases the understanding and support of members of the healthcare team can facilitate grieving, mitigate the feelings of anger and guilt that are inevitably present, and point the person towards the help of others who have experienced similar difficulties—through, for example, Issue (formerly the National Association for the Childless) and the Alzheimer's Disease Society.
Avoidance of grief
Although most people oscillate between confronting and avoiding grief, extreme avoidance of grief always takes place for a reason. People may avoid grief because they are members of a family or a society in which grief is frowned on; they may avoid it because they fear the consequences if they should express it; or they may simply believe that they have more important things to do.
Cultural influences may determine when and how grief is expressed, and anthropologists have reported great variation from one society to another.4 Whether or not the societal inhibition of grief within a culture is harmful is a matter for debate and research. One thing seems clear, however.
The wife or husband of someone with Alzheimer's disease may need support and understanding if they are to grieve for the loss of the person they married
Even within cultures there is great variation. Men, in particular, are often expected to inhibit their grief. This may explain the finding that, whereas women usually show more overt distress in the first year of bereavement than men and are more likely to seek psychiatric help, men take longer to return to the levels of adjustment of married controls than women.5 They are also more likely to die from heart disease after bereavement than are women of the same age.6 It seems that it is the inhibition of grief that is damaging to the heart rather than its expression. Bereaved men benefit more than women from therapies that encourage them to express feelings; bereaved women are more likely to benefit from help in reviewing and reshaping their assumptions about the world.7
Cultural pressures also prescribe when and whether grief is an appropriate response. Mothers who have babies are under considerable social pressure to rejoice rather than grieve. For many mothers to be, however, pregnancy is unwanted, and even those who have planned for and eagerly anticipated this event may need to grieve for the many losses that result from it. Kumar and Robson found that 10% of mothers had clinical levels of depression during pregnancy and 14% in the first three months thereafter.8 Similar figures have been reported in five other studies reviewed by Brockington.9
A mother may experience considerable shame if, because of feelings of depression, fear, or grief, she is lacking in maternal feelings for her new baby. She is likely to be acutely conscious of the danger that her lack of feeling constitutes to her child. If she finds the courage to admit this, we need to recognise the seriousness of the situation and to reassure her that it is not her fault. If we help her through the period of emotional turmoil, maternal feelings will usually emerge. If they do not the mother will need and should benefit from the help of a child psychologist.
Those who overreact to loss will benefit from opportunities to re-examine their negative assumptions about themselves and their world
Another group who tend to deny their own needs to grieve are members of the caring professions, particularly doctors, who spend their lives caring for others but who often find it difficult to acknowledge their own emotional needs. If we accept that it is appropriate and therapeutic for our patients and their families to express grief, why should we deny ourselves that privilege? It would seem that, like soldiers and members of the emergency services, we are trained to remain calm in the face of danger. This leads us to the assumption that, even when the emergency is over, we have no need to get upset. Yet, as Bennet's paper in this series showed, such stoicism is bought at a cost and doctors who find ways to meet their own needs for emotional expression and support are likely become better doctors and to find greater satisfaction in their work.10
Some people become stuck in states of chronic grief that cannot easily be put aside; this may result from high levels of anxiety about the world that now exists. Grief is both an expression of distress and a cry for help.
A woman who has had a bad experience of pregnancy may experience high levels of anxiety and a propensity to depression which may spoil her next pregnancy. Similarly people who have recovered from mental illness may dread its return. If they experience a loss that triggers natural feelings of grief they may convince themselves that they are “breaking down,” and this may indeed increase the risk that they will.
Those who overreact to loss will benefit from opportunities to re-examine their negative assumptions about themselves and their world, to review and replan their lives in ways that value and build on the past, and to venture forth into a world that seems more dangerous than it really is. Nothing succeeds like success, and quite small beginnings can lead to a restoration of confidence that eventually allows great progress to be achieved. There is much to be said for John Bowlby's claim that the most important thing that we have to offer frightened or grieving people is a “secure base,” a relationship of respect—with a person who has the time, knowledge, and willingness to remain involved—that will last them through the bad times.11
The articles in this series are adapted from Coping with Loss, edited by Colin Murray Parkes and Andrew Markus, which will be published in July.
Funding: No additional funding.
Conflict of interest: None.
Series editors: Colin Murray Parkes and Andrew Markus