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Clinical guidance for responding to suffering in adults with cancer

Identifying Suffering

PRACTICE POINT
b Recognising signs and symptoms of possible suffering, including verbal, emotional and behavioural cues, is an important role for healthcare professionals.WG consensus
OTHER KEY POINTS
Suffering is a subjective experience potentially caused by physical pain, emotional and/or spiritual distress. Suffering may result in a range of negative emotions and changed behaviours.41, 48-51
Sometimes suffering is not immediately evident as some people struggle to articulate their experiences.52, 53
Suffering may be reflected through hesitation, silence, ambivalence or general dissatisfaction. Verbal cues include questions about life, death, and spirituality, or talk about struggles, loss, low self-esteem and an empty future.3, 7, 8, 10, 12, 41-43, 45, 50-57
Demoralisation is an intense manifestation of suffering, which reflects patients’ inability to see value in their lives, both past and future.58-61

Introduction

As suffering is a complex concept that can include physical, psychological, social and spiritual reactions,3, 8, 10, 39, 41-43, 45, 48-51, 58, 59, 62-65 it can be challenging to assess and identify patients in need of particular care.39, 42, 45, 65, 66 Although the identification of suffering does not need to constitute a formal clinical diagnosis, recording its presence and actions in response to it are important. WG consensus

Suffering is a subjective emotional experience

Suffering is considered to impact on the whole person, rather than just the physical body.48 While suffering is often equated with physical pain, it can also have emotional, social and spiritual causes and consequences.39, 41, 51 It is well established that when people are confronted with a life-threatening illness or with death, they commonly experience spiritual suffering and question life’s meaning, even if they don’t hold specific religious beliefs.39, 66

Suffering is a subjective experience, influenced by life experiences, expectations and outlook.41, 48-51 Suffering that is unacknowledged, in particular, can also present as apparently intractable symptoms. WG consensus

When suffering might occur

Suffering can occur at any stage of the cancer continuum. Even if patients have finished treatment with curative intent or are in remission and have a good prognosis, adjustment to a new way of life can be challenging and lead to suffering.8 Healthcare professionals, therefore, should be mindful of cancer survivors who do not seem to be doing as well as expected physically and emotionally when they return for check-ups, or who do not react as positively as expected when informed that test results are good. WG consensus

A diagnosis of advanced cancer typically increases suffering,4, 48 including that of a spiritual nature. In these cases, an important role of healthcare professionals is to try to achieve a balance between facilitating the expression of grief and sustaining hope for both patients and families.58

A component of suffering is to question life’s meaning and value, and to ponder aspects of spirituality. Suffering can also be experienced in the survivorship phase following treatment.8 It is commonly experienced among cancer patients at all stages of the disease, and particularly at end of life.39

Seemingly trivial issues might trigger feelings of suffering in someone who previously appeared to be coping quite well. For example, delays at the clinic or difficulty finding parking, a busy clinician or receptionist who speaks abruptly, or reading about another person’s difficult situation might take someone to the limits of their endurance.

Suffering and emotions

Studies have shown that suffering may be manifested in a broad range of emotions including anger,43, 51, 58 irritability1 , anguish, shock, despair, sadness, vulnerability, insecurity, fear or grief10, 12, 41, 48, 50 , panic, frustration, yearning, doubt, boredom or jealousy.62 These emotions may be expressed verbally or through body language or behaviour.48, 54, 65 For example, patients may grimace or cry,65 withdraw socially1, 45 or appear uncommunicative.55 They may be resistant to advice, miss appointments or fail to comply with treatment recommendations.39 In some patients, suffering may not be outwardly visible to healthcare professionals and family so it is important to try to elicit information about suffering, even if there are few external indicators.

Articulating suffering

A number of studies have highlighted the difficulties people face in conveying their experiences of suffering.52, 53 Evidence of these struggles during conversations include patient contradictions;3, 10, 53 ambivalence;56 hesitations, silences, evasions and fumbling for words;7, 55 frantic attempts to change attitudes and behaviours;52 repeated complaints about health services;7 and questions about apparently minor aspects of the illness because major issues remain beyond patients’ desired level of control.55

What people say can also be indicators of suffering or may help them in their search to understand, overcome and give meaning to their illness.51 Patients may:

  • ask existential or spiritual questions about the meaning of life and death, their place in the world, and why the cancer occurred5, 13, 41
  • question their religion or religion in general, or seek spiritual answers43
  • voice a deep concern for their family8, 10, 41, 50
  • try to equate past wrongdoing with the cancer, asking “What have I done to deserve this?”9, 51, 57
  • talk of their ‘struggle’,51 ‘battle’ or ‘loss’.41 The loss could be physical, as in a body part41 , it could be emotional, as in the loss of autonomy or identity,8, 10 or it could be spiritual, such as a loss of meaning,10, 12, 39, 42, 43, 45, 67 or
  • make “desire to die” statements.

Sometimes patients may employ coping strategies such as positive thinking, bargaining or denial to convince them that the situation is not as bad as it actually is.10 At times, this may reflect unexpressed suffering.

How patients articulate suffering may also vary according to their cultural or linguistic background. It is important that healthcare professionals consider the use of appropriate interpreter services to assist patients from non-English speaking backgrounds to express their suffering.

Pain and suffering

Physical pain and emotional suffering are closely linked.42 Pain is both a cause and manifestation of suffering, and has an adverse effect on general wellbeing.1, 50, 68 Besides pain, cancer patients may experience a range of symptoms such as nausea, pruritus, thirst, neuralgia, fever or breathlessness.1, 62 Such ongoing pain and discomfort can contribute to other symptoms such as fatigue, insomnia, irritability, frustration, low mood, depression, anxiety and distress.1, 69 If these symptoms are not adequately addressed, they may become the patient’s primary focus.3, 12, 70-72 Suffering is often generated when the pain and discomfort seem uncontrollable and never-ending, and when patients can derive no meaning from the experience.39, 73, 74

Demoralisation and suffering

Some patients may display intense demoralisation and hopelessness, particularly if the cancer has been diagnosed as terminal.58, 59 Demoralisation can occur if patients feel they are persistently failing to cope with stressors which they, or those close to them, expect them to handle effectively. It is associated with feelings of impotence, isolation and despair, damaged self-esteem, hopelessness, pessimism and loss of purpose in life.60

Demoralisation is considered to be distinct from clinical depression, with demoralisation characterised by a feeling of subjective incompetence and helplessness, without necessarily the pervasive inability to experience pleasure that characterises depression.58, 61 A demoralised patient may talk about the burden they are to their family58 and may say things like, “I can’t see the point anymore,” or “There’s no reason to go on”.58, 59 Demoralised patients may not directly express a desire for death, but typically feel that their life has not been satisfying.58

There is a risk that demoralisation as a clinical problem is overlooked because the symptoms may be considered normal for someone in such a situation. However, using similar strategies for both people who are demoralised and those who are experiencing other kinds of suffering may be of benefit. Although the systematic review2 did not find a significant effect for spirituality domains for Cognitive Behavioural Therapy58or dignity therapy,75 which is designed to enhance end-of-life experiences for terminally ill people, these therapies are considered to be of value for demoralised patients WG consensus. See the section on Care coordination, referrals and interventions for more information.

Further reading
Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer (2003)1 has more information on how people react to the challenges of cancer.
VIGNETTE - Maureen

The following case describes how a patient’s outburst about a trivial issue, related to feeling undervalued, may be masking bigger issues of concern.

Maureen, a 56-year-old single woman with a poor prognosis lung cancer was referred to the liaison psychiatry nurse after becoming acutely distressed, sobbing, and shouting at reception staff after a lengthy wait for her medical oncology outpatient appointment.  

“They tell me I’ve only got six months to live, then they keep me waiting three hours for an appointment. Don’t they realise that every minute is precious!” she had cried.
 
Maureen was given time to speak privately in a quiet space and to air her frustrations. The liaison nurse enquired, “What has been the most difficult part of all this for you?”

Maureen reported increasing dissatisfaction in recent weeks due to repeated delays and rescheduling of appointments. She was “worn down by waiting,” which she found uncomfortable due to her uncontrolled cough and pain. She revealed that she felt fearful she would lose the support of friends who had driven her to appointments and also been inconvenienced by the delays.

The nurse was able to validate Maureen’s frustrations and fears, flag with the team the uncontrolled symptom burden and provide referral for transport assistance so that Maureen’s friends could maintain their role of emotional support rather than become overwhelmed with practical demands.

As her distress settled, Maureen expressed regret to the liaison psychiatry nurse regarding her outburst and confided that she felt very embarrassed. The nurse was able to facilitate re-establishing rapport between Maureen and the reception staff.


VIGNETTE - Ellen

The following case describes one example of how someone may articulate and deal with suffering and how this may be overcome.

Ellen had been diagnosed with disseminated breast cancer. After suffering a pathological fracture of her humerus, she recovered but embarked on frenetic activity: paying bills, replacing the fridge and getting carpets cleaned. Her GP wondered: “Why now and why the rush?” She broached the subject by asking her: "Is there anything you are scared of?"

Ellen revealed she was a lapsed Catholic. “I’m worried I haven’t made the grade and that I’ll go to hell when I die.” Her GP put her in touch with a priest, who promptly put Ellen’s mind at ease. The priest reassured Ellen that many people felt like her in moments of crisis. “It might help to remember that God is forgiving,” he said. “People also benefit from forgiving themselves too.”


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