Times of crisis can usually be turned into opportunities, and the intimacy of such moments between the woman and the doctor or nurse can produce deep feelings, sometimes tears. At times, it is appropriate to sit in silence and just the sense of being there can be recognition enough (Pace 2000). The most important point of all, at the core of every nursing or medical care situation, is the woman’s need for someone who is genuine. They need the honest truth, not evasion or empty reassurances. If the healthcare professional has not questioned and analysed his or her own beliefs for the reassurance, doubts and answers they provide, there may be little of value to offer the patient who is forced to confront the ultimate truths and uncertainties of all that comes thereafter.

Care that integrates the spiritual dimensions creates a nurse or doctor who is actually involved in a human relationship. Qualities that demonstrate the ability to provide better spiritual care include a supportive approach to the patient; what has been termed a ‘sense of benevolence’ to the patient; awareness of the patient, self and the impact of family and significant others; empathy; and non-judgemental understanding (Dickenson 1975).

It takes more than just education for a nurse or doctor to feel comfortable with spiritual issues. Introspection and an awareness of their own personal spiritual journey are required to integrate the spiritual domain into patient care (Pace 2000).

It is emphasized that healthcare professionals need to take care of their own spiritual needs. Failure to do so will lead to emotional exhaustion (Lane 1987).

Quality of Life

What is quality of life?

Quality of life was broadly defined as early as 1947, when the World Health Organization described it as ‘a state of complete physical, mental and social well-being, and not merely absence of disease and infirmity’ (King et al 1997).

Quality of life is a complex phenomenon that affects an individual’s personality and lifestyle. It is developed over time with physical, psychological, sociocultural, sexual and spiritual effects (Woods 1975). It is affected by change in appearance, mental states, personal and social factors and, in the case of cancer, the effects of disease process and treatments. It is tied closely to the concept of body image, self-esteem and self-concept, and is affected by attitudes, beliefs and behaviours (Penson et al 2000).

Poor body image can result in the patient feeling worthless as a person; physically unattractive or even repulsive; and unable to feel valued, loved or able to express themselves sexually (Box 48.2) (Dudas 1992). For some women, quality of life means feeling alive. It is personal and individual, and what is considered normal or acceptable to one person or couple may be unacceptable to another.

Box 48.2 The changes in sexuality and their effects

• Reduced physical contact

• Loss of intimacy

• Loss of sex drive and desire disorders

• Early menopause

• Infertility

• Reduced human warmth

Effects of gynaecological cancer

Both the diagnosis and management of gynaecological cancer can have a major impact on every aspect of a woman’s quality of life (Donovan et al 1989). It can be an overwhelming experience for a woman and her family, Then, before the woman has had time to work through her feelings of shock and grief relating to the diagnosis, she must begin treatment. There is no doubt that a diagnosis of gynaecological cancer can potentially compromise the key elements described for quality of life: body image, sexual health and relationships (Auchinloss 1989, Colyer 1996). Women of childbearing age experience sadness and anger at the loss of fertility, and women of all ages may view the loss of female organs as a loss of femininity (Steginga and Dunn 1997).

The short- and long-term side-effects of treatment may also affect a woman’s self-worth, self-esteem and confidence, and have potential or actual psychosocial and psychosexual implications (Box 48.3) (Anderson 1985, Sacco Ezzell 1999). For example, a premature menopause, hair loss, lymphoedema, a stoma or a surgical scar may impact further on the reaction to the actual cancer (Anderson 1993).

However, it is also important to remember that body image may be altered and affect sexual health and quality of life without any change in appearance, function or control (Price 1990). Being told the diagnosis of cancer may alter body image, as this new knowledge of change may affect the woman’s perception of herself and her health. This perception of change can lead to a distortion of body image; the woman may sense that something in herself or in her way of relating to others has changed, even before cancer or treatment have any physical effect. Smithman (1981) points out: ‘Some changes in function can be purely psychological, and yet the potential for disturbed self-concept is great’. It is therefore widely accepted that body image, sexual health and overall quality of life are affected by physical factors, physical sensations, and emotional and social reactions.

The partner

It is also important to assess the partner’s understanding and needs, as the effect of the cancer is on the relationship as a result of change to either individual. A needs assessment among cancer patients and their partners showed that 63% of the participants would have liked to receive more information about sexual functioning after treatment, and that 64% would participate in a specific counselling programme on the quality-of-life changes if this was offered (Bullard et al 1980).

Model (1990) examined reactions to body image change following surgery in some depth, and linked these to concepts of grief and loss. This is useful as it considers how nurses support both patients and their partners psychologically. Model suggests that we are far from doing this successfully, and that it is important to create an atmosphere in which patients and their partners feel accepted and understood if they experience anxiety, anger or grief, and to provide a medium through which they can express, share and clarify their feelings. Model recommends that the whole healthcare team should work together to do this, which does indeed seem vital, given that many patients and their partners express feelings of isolation following discharge from treatment and for some time thereafter (Colyer 1996).

A high proportion of women are anxious (31%) and depressed (41%) after surgery for gynaecological cancer (Corney et al 1992). The majority have chronic sexual problems and a high proportion would like further information on after-effects: physical, sexual and emotional. Fifty per cent of young women would have liked their partners to be involved, and 25% of the 40 partners who were involved would have preferred further information.

Ten years on from the publication of these studies, there remains a lack of consistency within both nursing and the medical professions in the ongoing assessment process used to identify change and impact on quality of life for both women and their partners.

What we must try to achieve

The specialist multidisciplinary gynaecological oncology support team has an important role in patient education and management of side-effects, aimed at maintaining or improving quality of life.

Faced with multiple adjustment demands relating to the cancer, the treatments, survivorship issues or palliation of disease and its symptoms, it is important that the couple are encouraged to prioritize what is important to them and have ownership over agreed interventions. It is essential that this assessment not only covers the cancer diagnosis and treatment, but takes into account what life was like for the woman and her partner/family before the cancer (Box 48.4).

Box 48.4 Aspects of quality of life that may change

• Altered body image

• Low self-confidence

• Low self-esteem

• Unable to deal with losses, i.e. fertility/premature menopause

• Loss of self-concept

• Loss of self-perception

• Loss of femininity

• Loss of control

Emotional impact (grieving scenario)

• Feelings of isolation

It is important that we view the woman as much more than a ‘cancer diagnosis’ and consider her uniqueness by asking ourselves ‘Who is this woman we are trying to help?’. In this way, we can establish how actual or potential change may impact on her current measures for her quality of life. Roles, identity and relationships such as being a wife/partner, lover, mother, daughter, sister, employee or employer, friend and carer may be challenged, threatened and even altered either temporarily or permanently. Issues such as housing, transport, finances, insurance and ongoing responsibilities for paying the bills and child care, along with the challenge of a cancer diagnosis and treatment, may affect her ability to cope. Her usual resources and coping mechanisms and strategies may be challenged to the limit and all this will impact on her quality of life.

Assessing the needs

The effects of both the cancer and treatments have the potential to be both abrupt and long lasting, even when the goal is cure. The impact of altered body image resulting from treatments and/or surgical procedures for chronic illness extends beyond the immediate patient (Wilson and Williams 1988). Therefore, the need for individualized assessment on how this will impact on quality of life, both before and following cancer treatment, is fundamental (Box 48.5). Assessment must be as specific as possible (Box 48.6) and address the woman’s concerns by self-assessment techniques.

Box 48.5 The assessment process

• Listening to how patients talk about their body, in positive or negative terms

• Observation of how patients behave towards damaged body parts

• Listening to relatives’/visitors’ reports about the woman and her methods of coping — is this typical coping behaviour?

• Observing for social withdrawal

• Identify social network/support

• Listening to patients’ verbal accounts about how they anticipate life will be beyond the stay in hospital, e.g. how they anticipate others may react to their appearance or body function

The changing focus of need

Typically, the focus both before and following cancer treatment is on physical need. However, issues such as being unable to continue to work and the consequent reduced income or transport issues due to reduced mobility preventing use of public transport may be paramount, and need to be given priority for the woman and her family. In the initial stages of diagnosis and treatment for a gynaecological cancer, quality-of-life issues may not seem so important and the focus of concern may be on the tremendous physiological demands that occur as a result of coping with the disease process and treatments. However, as the illness trajectory lengthens, previously held notions may change as a woman adjusts to a new identity as a person with cancer.

Quality-of-life assessment and issues relating to the impact of actual or potential change require reassessment during treatment, at follow-up and as part of the long-term rehabilitation process. In women where the cancer progresses or recurs, the goals may change from cure to prolongation of life with the best possible quality for the woman and her family. Criteria for futility must be established to guide the transition from active to palliative management.

Rehabilitation and palliation both begin at diagnosis and continue throughout treatment and follow-up. They address the specific desires of each person and it is recommended that they incorporate the contribution of every member of the multidisciplinary healthcare team.

The challenge facing all healthcare professionals is to achieve improvement in the quality of the patient’s life by reducing dysfunction and disruption, and providing support with physical, psychological, social and spiritual aspects. In order to achieve this, it is important to identify information needs and individual coping strategies, explore issues identified as important to the patients themselves, and set realistic and achievable goals.

Whilst families are often the primary source of ongoing support to female cancer patients, women also derive considerable support from other patients and from healthcare professionals. The medical team should aim to develop psychological and psychosexual skills to cope with this important area of care. Further research is also needed into how support groups may best meet patients’ needs (Veronesi et al 1999) and those of the care providers.

What we must learn

The following are essential in empowering both nurses and doctors to undertake their role: a comprehensive understanding of the aetiology of the gynaecological cancer and the effects of both the disease and treatment; knowledge of the ways of minimizing adverse problems; and assisting the woman and her partner in managing their needs.

Healthcare professionals must develop an appreciation of the wider issues and literature surrounding sexual health, altered body image, gender identity, role identity, cultural issues, religious beliefs, and how all the factors can influence self-esteem and body image and impact on quality of life in either a positive or negative way (Masters et al 1995).

Concern is often expressed in clinical practice that healthcare professionals lack the time and skills to deal with psychological and quality-of-life issues, although the literature suggests that giving patients the opportunity to express such concerns can be preventive of problems as well as therapeutic (Auchinloss 1989).

Despite its importance, quality of life is rarely a reported outcome in randomized clinical trials in cancer patients. Gynaecological oncology nurses, clinicians, educators and researchers must continue to work collaboratively to enhance the knowledge base regarding quality-of-life issues and to improve care provided to women with gynaecological cancer (King et al 1997). The impact of a gynaecological cancer on a woman’s quality of life is an important outcome parameter that may be measured as survival without significant morbidity (Anderson and Lutgendorf 1997).

Psychosocial Issues and Returning to Normality

The woman may have undertaken several different roles and responsibilities prior to the cancer diagnosis and treatments. She may have been the central supporting figure in a household of some complexity, and may have provided the economic support, as well as the responsibilities of a mother, a partner, a lover and a homemaker. The very act of returning to any or all of these roles is often a significant milestone in recovery.

Apart from the obvious anxieties about her prognosis and family relationships, financial worries and change in role can be an immense source of stress for the patient and partner. The potential for this needs to be assessed prior to treatment and at subsequent follow-up.

Often practical help can be offered, such as a letter to the employer or facilitating the intervention of social services, and giving information on benefit entitlements and grants (e.g. Macmillan) where patients are unaware of possible financial assistance, and help in dealing with transport problems.

For patients living with severe ongoing disability due to the cancer or its treatment, or those with progressive disease where the aim is no longer cure but palliation, additional grants such as disability living allowance, attendance allowance and ‘special rules’ or palliative care funding may be applied for. The benefits helpline should be contacted to clarify eligibility.

The issues that must be addressed (Box 48.7) may be ongoing, and follow-up appointments provide an opportunity to assess how the woman and her family are readjusting to life following cancer.

Box 48.7 Issues that must be resolved

• Childcare issues

• Relationship dynamics

• Work-related responsibilities

• Housing needs

• Transport, travel, parking and fares

• Finances and adequate social resources

• Loss of fertility and premature menopause issues

Sexuality and Psychosexual Issues Relating to Gynaecological Cancer

In 1986, the World Health Organization stated that key elements of sexual health were:

• a capacity to enjoy and control sexual and reproductive behaviour in accordance with a social and personal ethic;

• freedom from fear, shame, guilt, false beliefs and other psychological factors inhibiting sexual response and impairing sexual relationships; and

• freedom from organic disorders, diseases and deficiencies that interfere with sexual and reproductive function

A gynaecological cancer diagnosis and treatment may threaten or actually change the key elements described for sexual health, and are associated with considerable sexual dysfunction (IOG 1999).

The background

A woman’s physical genital development, her attitudes and security about being a woman, and her view of herself in relation to others, especially in intimate relationships, are all part of her uniqueness. Sexual functioning and concerns vary throughout one’s lifespan and cannot be assumed for any age group or extent of disease. A woman’s genital region may be perceived as psychologically very special, being both exquisitely sensitive and primal in sexual arousal. A malignancy in this area may be especially disturbing and significantly different in its emotional effects from cancer in other parts of the body. Reactions may vary according to feelings of the individual woman about her genitalia prior to developing a gynaecological cancer. However, there is no doubt that cancer of the vulva, which necessitates very evident vulval mutilation as a consequence of surgical treatment, can produce severe problems with psychosexual function (IOG 1999).

The quality of a woman’s life needs to be considered and assessed in relation to what it was before she became ill. An unsatisfactory relationship prior to a cancer diagnosis may be improved by a couple having to cope and coming closer together. Alternatively, poor relationships may continue to be devoid of intimacy and affection. How the effects of the cancer and its treatment impact on either of these scenarios needs ongoing assessment.

Effects of gynaecological cancer

A study by Cull et al (1993) included 83 women with early-stage cervical cancer, half of whom had received surgery and half of whom had received radiotherapy. They were studied by standard self-report questionnaires and semi-structured interview. Over half reported deterioration in sexual function, and the irradiated women suffered more with loss of sexual pleasure. Many women felt that their psychological needs were not being met adequately.

A similar UK study included 105 women who had undergone radical pelvic surgery, of whom 65% had been treated for primary cervical cancer (Corney et al 1993). The mean time since treatment was 2 years. Of 73 women in whom the vagina had been preserved and who were in a sexual relationship, 16% never resumed intercourse. Two-thirds were experiencing sexual difficulties and around half reported a deterioration in their sexual relationship. However, this study highlights the need to never ‘assume’ as, interestingly, around one-third of these couples felt that their marital relationship had actually improved.

The need to provide information

The inadequate information about the effects of disease and its therapeutic interventions on people’s sexual function and alterations in their quality of life is also reflected in the scarce amount of empirical research available on these issues. All oncology professionals should be aware of the importance of recognizing and addressing issues of sexual function as an integral aspect of quality of life for people with cancer and their partners (Gallo-Silver 2000), and both nurses and doctors need to develop skills in talking to patients and partners about sexual concerns and in taking a sexual history (Smith 1989, Green 1999).

Sexual function is an essential and fundamental area of the assessment process and should be discussed in a continuous fashion, rather than a haphazard or one-off fashion. A woman diagnosed with a gynaecological cancer and needing to undergo any form of treatment may have concerns relating to potential change in her sexuality or sexual function. However, she may be too embarrassed to ask and may worry or fear that it may be perceived as inappropriate to ask or discuss.

In a society that has moved rapidly towards an awareness of sexuality of all ages, these patients will demand, not without justification, that medical science passes both appreciation and expertise concerning this dimension of their disease.

They will require and expect therapeutic interventions which will assist them in becoming psychosexually as well as physically rehabilitated (Derogatis 1980).

The goal of intervention

The goal of sexual rehabilitation is to restore the patient’s ability to engage in intimate interpersonal relationships, and incorporates the restoration of self-esteem and bodily function or adaption to change (Bancroft 1989). When appropriate and desired, sexual rehabilitation includes restoring physical ability to engage in sexual activity. Sexuality is an important aspect of quality of life and has a tremendous impact on an individual, their partner and families (Rutter 2000).

Listening and asking

Loss of sex drive may arise from an altered body image or there may be unresolved feelings such as guilt or fear of an association between sexual intercourse and cancer. Full assessment, discussion and information about the facts, in order to remove any misconceptions, are essential. The effect of the diagnosis on the partner is often overlooked, but it cannot be emphasized too strongly that preparation for the couple is the key to preventing avoidance or silence. The partner may fear that he could hurt or harm the woman, and other misconceptions that he can ‘catch’ cancer himself through being intimate may cause a barrier between them. Simple explanations and reassurance both before and following treatment, involving both partners if possible, can prevent problems arising or minimize problems by recognizing the important issues early.

Sexual functioning should be enquired into at the early follow-up visits and assessed continually, so that if any changes or difficulties occur, they can be recognized, support can be offered and appropriate interventions or specialist psychosexual referrals can be made as appropriate.

Sexuality may be expressed in a multitude of ways so it is imperative that healthcare professionals do not make assumptions about sexual behaviour, and understand that information assists women in regaining a sense of control over their behaviour and destiny (Burke 1996). This applies just as much to the late stages of the disease as to the early phases of the journey.

When physical love and intimacy have been important and are suddenly withdrawn, their loss is felt. Even when they have not been important, their need may now be recognized. We cannot assume. However, loving touch in the palliative stage of the disease process may be avoided for fear that it may lead to more sexual intimacy. This may be overcome if both partners are able to discuss their anxieties, either with each other or facilitated by a healthcare professional.

The woman may not touch her partner or avoid closeness for fear that it might lead to physical sex. The man may be just as fearful that coitus would damage or hurt his partner, and consequently keeps his distance. Both should be reassured that sexual intercourse is ‘acceptable’ at any stage of the disease process if there is sexual desire and drive on both sides and if it is physically possible. However, when coitus is not physically possible, methods of mutual masturbation can be explored, and sexual expression using sensate focus techniques can be explained (see below).

Communicating a willingness to assist women to ways to express their sexuality in spite of the cancer and consequences of treatment can be a challenge (MacElveen-Hoehn and McCorkle 1985). Basic counselling skills such as listening, a non-judgemental approach, and an open and accepting attitude with clear boundaries help to legitimize concerns as normal and valid (Lamb 1985, Laurent 1994).

Intervention

Both cognitive and behavioural sexual rehabilitation interventions have been suggested to assist women and their partners to adjust to the physical, psychological and psychosexual changes due to cancer and their impact on the relationship (Gallo-Silver 2000). The interventions described aim to increasing understanding and gradual adjustment, allowing the woman and her partner to have ‘ownership’ over the interventions chosen and to regain control.

Understanding and familiarity of appropriate use of the following interventions can prepare healthcare professionals to assist patients and their partners with sexual needs and concerns:

• educating patients about the phases of sexual functioning and the impact of treatment;

• giving permission to explore their ability to respond to sexual stimulation by using self-pleasuring exercises; and

• teaching sensate focus exercises that structure non-coital foreplay and suggesting changes in coital positions to increase both access and comfort.

The P-LI-SS-IT model (Box 48.8) (Royal College of Nursing 2000) is a framework for assessment of sexual need and can be useful as part of the multidisciplinary team approach to assessment of sexuality in women with cancer.

Box 48.8

Outline of P-LI-SS-IT model

Level 1: Permission (P)

The challenge for all healthcare professionals at level 1 is to create a comfortable environment that gives patients permission to discuss concerns and problems related to their sexuality and sexual health by:

• ensuring the physical environment is comfortable and private;

• communicating to the patient using acceptable counselling skills such as openness, reflection and paraphrasing;

• using cue questions to give the patient the opportunity to raise any sexuality and sexual health concerns;

• giving reassurance, where required, that the patient’s current sexual practices are appropriate and healthy or that experimentation is appropriate;

• having a range of information available that is educational and non-personal;

• knowing where to get further information from and routes of referral for the patient;

• acknowledging the needs of sexual partners; and

• acknowledging the sexuality and sexual health needs of patients in relation to their cultural background.

Level 2: Limited information (LI)

This is where healthcare professionals provide non-expert or limited information relating to sexuality and sexual health. For example, a woman receiving pelvic radiotherapy will need to know about vaginal dryness and possible implications for her future fertility.

Level 3: Specific suggestions (SS)

To provide specific suggestions to help patients with sexuality and sexual health needs, healthcare professionals complete training at specialist practitioner level.

Level 4: Intensive therapy (IT)

The most advanced level of addressing sexuality and sexual health care involves complex interpersonal and psychological issues and is used with patients who have specific sexual problems such as dyspareunia or vaginismus. Relationship counselling falls into this category. Further training is needed in psychosexual medicine and relationship therapy to undertake this stage.

Source: Royal College of Nursing 2000 P-LI-SS-IT model. In: Sexuality and Sexual Health in Nursing Practice. RCN, London.

All patients need permission and limited information, frequently dispelling myths and eliminating ignorance about the disease and treatment effects on their sexuality. This is often enough to enable patients to resume sexual expression and intimacy. Specific suggestions can help patients whose radical surgery or radiotherapy treatment has resulted in physiological or anatomical alterations, such as a stoma formation or vaginal stenosis, or when the mechanisms of sexual response have been affected.

Despite careful assessment and interventions, problems may still arise and expectations may not be met. The need for the skills and expertise to provide in-depth assessment of need and intensive structured therapy in the form of marital or sexual counselling is recognized in the P-LI-SS-IT model (Bancroft 1989, Penson et al 2000). Doctors and nurses need to be secure in the knowledge that it is appropriate to refer to a sexual therapist as the need is identified with the patient or couple.

Behavioural therapy

Direct behavioural approaches for treating sexual dysfunction due to performance anxiety are advocated (Masters and Johnson 1970). Sensate focus may be useful as it is aimed at regaining intimacy within the relationship through mutual touching and physical sexual sensation and stimulation of each other’s body parts, while not necessarily needing to involve the genitals or the act of intercourse. It is essentially about being able to communicate and relax with their partner, and developing a sense of trust and closeness which may have been lost (Leiblum and Rosen 1989). The sensate focus method restructures and reorientates how couples may ordinarily approach sexual interactions, allowing them to move away from old familiar habits and reinvent the physical side of their relationship. It is about touching and being touched. However, at the heart of the programme is an initial ban on sexual intercourse, particularly genital contact and penetration, until performance anxiety and fear of failure have subsided and trust within the relationship has been re-established.

Finally

For a woman to be sexually complete, she must feel secure and this is a fundamental need for a woman facing the future, especially when she is terminally ill. Respect, trust and love are needed in order to establish security. Fear, distrust and anger need to be dispelled. Respect includes self-respect and this may have been absent even before the occurrence of cancer. Altered body image may exacerbate already fragile and vulnerable emotions around oneself. To acknowledge the hurt and pain of emaciation, hair loss, discharge, bleeding, abdominal distension, colostomy or urostomy is difficult, and it can help to share this difficulty by not avoiding the important issues for the woman. Love of the person rather than the body must be constantly reinforced. There is an opportunity to engender new self-respect and trust, in discussing openly and honestly the issues that may be painful but most important to the woman at that time.

Breaking ‘Bad News’

‘Bad news’ can be defined as any information that dramatically alters a patient’s view of her future for the worse (Kay 1996). The way in which bad news is delivered affects both the patient’s and the family’s ability to cope, and should therefore be done in a sensitive and, where possible, planned and supportive way.

It is in the nature of gynaecological malignancies that the possibility of cancer is uppermost in the patient’s mind even before the investigations that confirm her worst fear. Most studies in which patients with cancer have been asked how much information they want report that over 90% want all the information available, good or bad.

Bad news may be broken in the following circumstances:

• at the point of diagnosis;

• at the point of recurrence; and

• when entering the terminal phase of illness.

The manner in which this responsibility is undertaken determines the subsequent relationship between the patient and the healthcare professional. Trust and respect established at this time will ease future care and the relationship between them.

Breaking bad news well is important for the following reasons:

• to maintain trust which enables the relationship between the patient and healthcare professional to be based on openness and honesty;

• truthfulness about the disease allows open communication with the patient and fosters discussion about the disease process and its management;

• uncertainty may be reduced;

• to prevent the demoralization caused by unrealistic hope;

• to allow appropriate adjustment of the patient and her family, empowering them to make informed decisions about their future care;

• to prevent collusion with family members which destroys family communication and prevents mutual support; and

• information/bad news given to the patient and her family must be communicated to the patient’s primary, secondary or tertiary care team to allow open and sensitive communication between care settings.

Standards of care suggested for breaking bad news

The specialist in charge must ensure that members of the multidisciplinary team have appropriate training and skills in breaking bad news. The patient’s autonomy must be respected when making management plans. In this way, the patient will be given the option of involving a family member or carer to support her at the time of breaking of bad news. The doctor or specialist should plan, whenever possible, how this will be done, the setting and with a specialist nurse or appropriate member of the team present. It is the responsibility of the specialist team to ensure swift communication and liaison between the hospital-based team and the primary care services when bad news is broken.

The actual process of breaking bad news

Women often report that they ‘shut off’ and ‘could no longer bear to listen’. Hogbin and Fallowfield (1989) have suggested that tape recording ‘bad news’ consultations and giving the tape to the patient to take away with them may help them to understand the problem, overcome failures of recall, and explain the diagnosis and any treatment plan to their relatives.

However, this approach may not suit every patient and may create further obstacles to communication by preventing the interview from achieving the degree of privacy and intimacy which is necessary for two-way open interaction.

Another suggestion is to write down the facts from the information given verbally following the consultation in which bad news is broken, and allow the patient an opportunity to absorb the information at her own pace over time and once the shock process has started to shift. Once the reality of her new situation has sunk in, the need for more factual information and exploration of the options in order to take back some control often takes over from initial fear, shock and stunned silence (IOG 1999). Written information following the breaking of bad news can then be extremely useful in helping the patient and family to formulate their questions prior to their next consultation with the specialist team.

Many areas also have local cancer support groups and there are national cancer helplines which may also be useful in helping patients to come to terms with the ‘bad news’ given (see Sources of support below).

Being realistic

It is important to be realistic at all times and to avoid giving false reassurance. At the same time, it is important not to deny the patient all hope. Encouraging a positive but realistic attitude will help. The importance of this stage cannot be emphasized too strongly. If the multidisciplinary care team forms an open and honest relationship when there is hope for cure, this will be far easier for the woman to accept if disease recurs or her condition does not respond to treatment and she enters the palliative stage of her journey. Some women will choose to cope with the news by denial. They should not be assaulted with the truth but allowed to come to terms with the situation in their own time. No response is needed other than gentle reiteration of the truth, relating the known facts when requested. Denial may, in part, be responsible for a woman’s apparent lack of understanding after the initial interview. In this case, it should be carefully noted for use in further meetings, in order to manage her care in a professional, sensitive and individualized manner.

Talking to Children about Cancer

What makes cancer especially difficult are the many unknowns. Living with uncertainty is part of having cancer. There are some questions that cannot be answered. Helping the patient and her partner to accept that fact and to find out all they can to make the unknown more familiar to them is the first step in allowing them to be able to talk to their children and help them to accept the fact too.

Children need to be given information about their mother’s condition, to a degree dependent on their maturity, in order to understand and cope with what is happening. Honesty is very important when communicating with children. The best person to give children information is the parent or another close family member. If they feel unable to do this, they can enlist the help of a professional; for example, a member of the multidisciplinary specialist cancer care team, a counsellor or social worker. However, it is important that the parent is present when the child is told bad news so that they know exactly what has been said and can comfort them with their immediate reaction to it.

Everyone who has a relationship with the patient will be affected by the cancer diagnosis, even if they do not show their feelings. If their mother is frequently absent or not well enough to care for and play with them as she did prior to her illness, children may feel inexplicably rejected. Without reassurance, a child may feel responsible for his or her mother’s illness or subsequent death.

A child’s understanding of illness and death, although not the same as an adult’s, is often underestimated. Children can often accept the inevitable more easily than their elders. Sometimes all that is needed is time to adjust and the maintenance of some routine and stability. However, there are things that parents can say or do to help their children to cope with change and uncertainty.

Children need to be given information in a way they can understand. It is important that jargon and excessive medical details are avoided. Tell children what has happened, explain what will happen next and be prepared to repeat the information and to ask children questions to check whether they have understood what they have been told. The use of drawings or story books can help younger children to understand. Children need accurate information about cancer, not fears and assumptions gleaned from other sources.

It is important to ask children whether they have any questions and to let them know it is all right to ask anything they want. Children often take a long time to process information and may need to come back much later and ask more. As well as telling them about changes, it is important for them to know what will stay the same. Reassurance that they will always be looked after and loved in spite of the illness will help maintain feelings of security. However, false promises must be avoided, as cancer involves great uncertainty.

It is important to listen to children, as they will let us know what they can cope with. Honesty about what adults do not know is as important as sharing what we do know if children are to continue to trust. A child has a right to know anything that affects the family, as cancer does. Not telling them may feel like a breach of trust and children usually know when something is wrong. If parents try to protect them by saying nothing, they may actually develop fears which are worse than the real situation. Children can be left feeling isolated if they are not told the truth. Attempts to protect them may enhance their anxiety. Children have an amazing ability and capacity to deal with truth. Even sad truths can relieve the anxiety of too much uncertainty. Through sharing their feelings and being prepared to acknowledge and express sadness, the parents can offer support for their children.

Coping with cancer in the family can be an opportunity for children to learn about the body, cancer, treatment and healing. They can also learn about feelings and the strength of the human spirit in difficult times. Telling children means that they can share significant emotions with their parents and siblings. Children need to be given permission to feel sad, angry or scared. Children are very resilient. They can cope with difficult information if they are supported with it, left with a feeling of hope and assurance that they will still be loved and cared for.

It is important to talk to children individually as children’s understanding and their concerns differ with age.

Children aged 3–7 years

Young children need very simple explanations of the cancer. The use of drawings will help to explain it to them, and will also help parents to understand their worries and feelings. At this age, children are very wrapped up in their own world and will be concerned about whether their needs will be met in this frightening situation. This anxiety may be expressed through regressive behaviour (showing the behaviour of a younger child) such as tantrums and bedwetting.

It is important that parents maintain their usual routine to provide reassurance, enlisting the help of other relatives and the child’s school to do this. Discipline needs to be consistent, rewarding good behaviour and providing extra affection. Difficult behaviour should settle down in time as it is a normal reaction to stress and change.

Major fears for children of this age will be change in a parent; this may be frightening, such as hair loss, sickness and separation from the mother if she has to be admitted to hospital. Children will need a lot of reassurance from the mother and their well caregiver in order to cope with this change. Things that may help are simple information, use of calendars to help them understand time scales, reading them books about hospitals, explanations of how equipment works, creating a child-friendly environment in the hospital as much as possible, frequent visits to the ill parent, making cards and tapes for them, and speaking frequently to their mother on the telephone. For younger children especially, it is important to use the correct language and explain things literally as they may not understand what cancer, illness or death means. Using vague explanations about a mother’s death, such as ‘Mummy has gone to sleep’, should be avoided as it may leave a young child confused when their mother does not wake up, or lead to fear of going to sleep themselves and nightmares.

Children aged 7–11 years

At this age, children have a more complex understanding of the situation. They will very often worry greatly about their mother and what will happen in the future. This may lead them to protect her by not asking questions or raising their fears. Keeping communication open and encouraging the children to do the same can be positive. It is important to let the school know so that they have alternative sources of support if they need it. Again, behaviour may be affected; children may become more aggressive or more withdrawn. Schoolwork may be affected. It is important that parents provide a lot of reassurance and support, as well as maintaining firm boundaries with regards to discipline.

Teenagers

Adolescents have a particularly difficult time, as they are already struggling with all kinds of development issues. They are trying to find a new identity and balance between dependence and independence. A mother’s illness will challenge this balance and may promote resentment and anger in the child, which ultimately leads to guilt. They may rebel to a greater degree, exhibiting a lot of anger, or alternatively they may mature too quickly and take on a lot of responsibility.

After treatment, it is important that parents continue to keep children informed of what is going on and to balance hope with reality. If the mother’s cancer recurs, children will need to know this. There may come a time when the reality is that the mother is not going to recover. This will be an incredibly difficult time for the parents and it may seem even harder to discuss this awful reality with children. Death and dying are not talked about openly in our culture, and it may be difficult for the mother to face the knowledge that she is going to die. It will be difficult for the whole family, including the children; facing it together and allowing them to be part of that process is likely to help them face the future.

It is vital that parents are honest and discuss the reality with children, as it makes it harder for everyone to cope if they are kept in the dark. Like adults, children need to prepare for loss and have the opportunity to say or do important things for their mother.

Children often know much more than we imagine and need to be given permission to talk about it. It is important to use language that they will understand, avoid jargon and use open, honest and direct communication. Most importantly, children need to be listened to. Parents can help their children face life afterwards by preparing them for the future without their mother. This is never going to be an easy process but however long a mother may have to live, time with her children can be precious. The whole family may discover reserves of love and inner strength that will enhance the rest of their life together.

Emotional difficulties linked to cancer are not always easy to talk about and are often difficult to share with those to whom we are closest, especially when children are involved. Trained counsellors in cancer care use their skills to help people talk about their thoughts, feelings and ideas, and may help in the process of untangling some of the difficulties and confusion that living with or dying from cancer can bring.

Recurrence of Disease and Cessation of Active Therapy

For the woman who hopes to be cured, the discovery of the recurrence of cancer is a time of great despair, rage and fear. This is often worse than the time of initial diagnosis and can be devastating. The three causes of anguish and anger described most commonly by patients are: delay in diagnosis; not being told the diagnosis until they were too ill to complete unfinished business; and return of the cancer when they felt they had been assured of cure.

The resentment at having been cheated can be great. For some, it is simply having cancer; for others, the word ‘cure’ has probably been ‘heard’ rather than said, but all feel that false hope has been given. The balance between false hope and no hope is difficult to achieve but is important (Saunders and Baines 1989). Anger may also be accompanied by spiritual pain. If this anger is accepted and understood, the path to acceptance is cleared. If it is not understood, and especially if it is met by a defensive attitude, it may increase as unresolved or unexpressed anger and may lead to depression (Massie and Holland 1989). Permanent, intermittent or transitory denial of the prognosis represents a necessary defence mechanism against a massive assault on the mind and emotions, and should be treated as such; the patient should be allowed to accept her situation at her own pace (Kay 1996). Cessation of active therapy means that the woman may now be facing the terminal stage of her journey. This knowledge is accompanied by new fears: the course of the disease, disfigurement, dependency, loss of self-respect and dignity, dying and the manner of dying.

Open discussion, honesty and acknowledgement of these anxieties with all concerned will help towards emotional security. Stopping treatment need not remove all hope. The nature of hope is to be flexible: hope for cure can be replaced with hope for time, and an opportunity to complete unfinished business or to aim for a particular personal milestone. Loneliness and a feeling of isolation are not only hard to bear in themselves but also heighten other symptoms of advanced disease. The isolation is sometimes imposed by the woman herself when the thought of parting becomes intolerable (Maguire 1993).

It is impossible to overestimate the benefits of an offer of palliative care; Macmillan nursing support, both community and hospital based; cancer counsellors and the specialist gynaecological cancer nurses. Even if little physical help is needed, the psychological support and ongoing relationship with the specialist multidisciplinary support team cannot be introduced too early. Palliative care support begins at the time of diagnosis, when there is uncertainty, and provides a natural link for the woman throughout her cancer journey. It is an important role for her and her family in providing reassurance that she will not be abandoned when there is cessation of active treatment. The focus of care will now be on her symptoms, psychological support and individual needs rather than her tumour. It is vital to watch and listen with care and to respond to what is seen and heard.

Now the patient has to face the more immediate prospect of death, it is possible to deal honestly with her without moving into stark truth (Saunders and Baines 1989). The immediate reaction may be disbelief or denial (Faulkner and Maguire 1994, Kay 1996). She may react with anger, either immediately or at a later stage. Depression is common and these different emotions may occur at any time; daily alterations between one and another are possible. The depression which may follow the woman’s realization of the severity of her illness should not be confused with endogenous depression. When an individual is faced with the imminent prospect of death, depression and grief are appropriate, not pathological reactions (Massie and Holland 1989).

Although most patients welcome the truth, it may take some time and much discussion on several occasions for her to face her situation fully. She needs to feel she can survive as a fully integrated person, whatever length of time she has and however the disease process or treatment affects her. There needs to be room for hope and for denial (Pace 2000). A scientific approach often suggests that we must give patients ‘the facts’ and help them to ‘accept the truth’, but denial may be a functional and appropriate coping skill at that particular time (Corless 1992). As the old hospice adage goes, unless something is terribly wrong with where the patient is, that is perhaps where the patient needs to be.

Reactions of partner, family and close friends

The partner, family members and close friends often exhibit similar reactions of grief, anger and denial. However, this is unpredictable, as is each person’s individual reaction to a natural process of loss and change.

How each deals with that experience will be different depending on their individual relationship and their usual personal coping mechanisms. Feelings of loneliness and isolation are particularly difficult to endure for both the patient and those close to her, and are not helped by mere physical proximity to each other. They each need time and space to express themselves and what they are really feeling.

Family and friends who do not express their emotions or acknowledge either their own or the patient’s pain may simply not know what to do or say, and it may be sufficient to show them that simple, truthful exchange is not damaging. The thought of loss may be unbearable and may be managed by assuming a routine and not facing up to the reality of change for both the woman and those close to her. This can be painful for the patient and cause anger and resentment unless its cause is understood. The partner may also feel isolated, emotionally and physically impotent, fearful of not being adequate and unable to bear the thought of any loss or death.

Close involvement in emotional support and practical care may ease the burden if sufficient confidence and professional help is provided. Trained cancer counsellors, Macmillan nurses and specialist gynaecological cancer nurses offer a service aimed at psychological support for the partner and family from diagnosis and throughout the journey, and either provide or refer on the appropriate bereavement services.

Fear of symptoms in advanced stage of disease

The patient’s mental state will profoundly affect her symptomatology (Faulkner and Maguire 1994; Twycross 1997a). Fear of symptoms causes anxiety in the palliative stage, not only for themselves but for the significance they bear. If this is discussed fully with the patient and relatives, the anxiety can be diminished and the future can be faced with confidence that problems will be taken seriously.

The symptom most feared by patients and their families is pain. It was Cicely Saunders who first discussed the concept of ‘total pain’, which includes psychological, emotional, social and spiritual components as well as physical pain. Mental pain may present as physical pain or contribute to the extent of existing symptoms. Even mild pain should be taken seriously, so that confidence is established that pain can be treated quickly and effectively. When psychological adjustment and acceptance are achieved, the quantity of analgesia required may be reduced markedly.

Saunders and Baines (1989) have stressed the role of symptom control, but also point out that this requires time and close contact with the woman to give her the confidence to impart her deeper feelings, whether they be of anger, depression, guilt or regret. Guilt, anger and grief all need to be expressed, understood and acknowledged as valid, even if answers cannot be offered.

Factors that lower the pain threshold include fear, anger, sadness and boredom. Sympathy, understanding, companionship, diversional activity and elevation of mood raise the pain threshold (Twycross and Lack 1983).

Good communication which allows expression of fears and anxiety, and that conveys understanding and support can be a powerful means of alleviating pain. In some instances, the relief of persistent pain may require no more than providing the honest communication that has previously been denied to the patient (Lichter 1987).

It is a feature of all aspects of modern life that inadequate attention is given to spiritual needs. The effect on both the dying and those caring for them is ‘spiritual pain’. Religion is a component of spirituality but is not always the total whole.

Man is not destroyed by suffering, he is destroyed by meaningless suffering (Frankl 1987).

Symptom control

The psychological and emotional aspects of care cannot be adequately assessed and managed if a woman is experiencing uncontrolled physical symptoms. Moreover, the patient’s mental state will affect her symptoms profoundly.

The aim of symptom control is to release the woman from physical distress so that she can focus on important issues, such as:

• rehabilitation;

• changes in role;

• emotional adjustment;

• focus on relationships;

• unfinished business;

• meaning of life (Kay 1994).

Treatment goals must be realistic. The aim is to free the woman from the limitations imposed upon her life by the symptoms, as far as possible. This needs to be approached by a specialist multidisciplinary team wherever the woman chooses to be looked after (i.e. home, hospital, hospice or nursing home). Expert nursing care needs to be offered, including gynaecological cancer nurses, palliative care nurses and community Macmillan support and district nurses; counselling; palliative care doctors; rehabilitation services, including physiotherapists, occupational therapists, social workers and complementary therapists; spiritual support; family support; terminal care and bereavement services.

Physical, social, emotional and spiritual needs are often combined and can be complex. They will require time and sensitivity from a team approach in order to manage care.

Pain control

This is managed best by following some simple general rules. First, it is important to try to establish the cause of the pain. Not all pains are due to cancer itself; previous treatment and incidental causes are also important. Investigations may be appropriate, although very ill patients should only be subjected to even simple investigation if it is clear that different results will lead to differences in management.

Assessment of pain

Clear assessment of the pain is required based on the patient’s verbal reports. A history of the site/s, area of radiation, duration, aggravating and relieving factors, as well as relevant clinical examination is needed. It is important because continuous pain (visceral and soft tissue) responds to morphine, whereas other types of pain (bone, nerve, colic or non-cancer-related pain, e.g. migraine, angina) need other approaches (Kay 1994).

The pain must be approached with analgesia and with measures designed to improve the woman’s ability to endure the pain by restoring her sense of personal worth, and by providing her with opportunities for creative and meaningful activity for as long as possible. Assessment tools may be useful in the assessment of complex or multiple types or sites of pain.

A body chart may be useful for initial assessment because it serves as a communication tool by making the pain ‘visible’. It demonstrates the sites of pain, as 80% of patients are thought to have two or more pains (Kay 1994). It should be drawn with or by the patient herself.

Recording pain scores is another simple way to monitor difficult, complex pain control. The woman is asked three times a day to rate the severity of her pain on a scoring system of 0–10, where 0 is no pain at all and 10 is the worst pain imaginable. The scores are reproduced on a pain chart or kept in a patient diary. They may be useful to monitor responses to different treatments, are subjective to the woman’s individual experience and allow early changes in pain management to be considered. It is important to remember that pain is whatever the patient says it is (Twycross 1997b).

Route and frequency of drug administration

When possible, analgesia should be given by mouth. Adequate analgesia is obtained by regular administration of an adequate dose of an appropriate drug at the time intervals which take into account the compound’s pharmacokinetics and the individual woman’s routine, i.e. time of waking, meal times and sleeping. This reduces the risk of breakthrough pain, but alternative or additional analgesics must be considered and prescribed for breakthrough pain before it actually occurs. Persistent pain requires preventative therapy; analgesics should be given regularly and prophylactically (Twycross 1997b).

Choosing the correct analgesia

The World Health Organization (1986) has suggested a three-stage analgesic ladder for the management of pain. This involves the choice of non-opioid analgesics, mild opioids and strong opioids, each stage involving appropriate use of other non-opioid or adjuvant drugs which may relieve pains of varying type and cause. If a drug fails to relieve the pain, it is important to move up the ladder or/and consider adjuvant drugs, but not to move laterally in the same efficacy group.

The right dose of analgesia for an individual woman is the dose which relieves the pain at night, at rest, during the day and on movement, although this may not be completely possible (Twycross 1997b).

The response to the analgesia must be monitored to ensure that benefits of treatment are maximized and adverse effects (e.g. drowsiness, nausea and constipation) are minimized.