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Clinical guidance for responding to suffering in adults with cancer

The importance of responding to suffering

PRACTICE POINT - The importance of responding to suffering
a Acknowledging and responding to suffering, including spiritual issues, in patients and their families is an important component of clinical care.3-7
OTHER KEY POINTS
Suffering is commonly experienced among cancer patients at all stages of the disease, including at end of life and in the survivorship phase following treatment.8, 39
Acknowledging and responding to suffering in a timely manner can help patients and families cope better with physical, social, emotional and spiritual issues.1, 40
When patients and families are less distressed they are better able to draw on their existing personal resources to help them meet ongoing challenges.1, WG consensus
Unrecognised suffering can lead to increased suffering, and may contribute to the patient developing a mental illness such as depression.4, 41
Timely identification of suffering can prevent inappropriate psychiatric diagnoses and prescriptions.42
Both patients and healthcare professionals can be provided with an opportunity for personal growth through a sensitive and timely response to suffering issues.42-44

Introduction

Attending to suffering has become an increasingly important component of treating people with cancer. It is considered an essential aspect of the patient-centred model of care, which supports the dignity of patients. Suffering, with its associated losses, can significantly reduce quality of life.39, 45 Cancer can also cause great suffering for families, it is therefore important that the suffering of the family members of the person with cancer is not overlooked. Often, both patients and families feel more reassured when they know the suffering of their loved ones has been acknowledged and accommodated.

Time

While time constraints and the difficult nature of dealing with suffering may appear as barriers,6, 39 it is important for healthcare professionals to consider suffering as a key clinical and moral issue in their work.3, 12, 45 In many cases, extra time is not required to attend to suffering. Compassionate questioning, empathic comments and acknowledgement may be all that is needed for patients to rally their own resources.

Although suffering manifests in different ways, responding to suffering in a timely manner and allowing patients to express their emotions can bring relief to both patients and their families. Allowing patients to discuss issues of suffering appears to increase their ability to cope with the illness itself and with the other physical, social, emotional and spiritual difficulties that are linked to suffering.1 Patients whose suffering has been validated may be more open to working collaboratively with the treating team.

Benefits for patients and families

When suffering is acknowledged and responded to, individuals tend to feel supported, less hopeless and less overwhelmed. If they are less distressed, patients are often better able to utilise their own physical, practical and emotional resources to address the ongoing challenges of their illness. Clinical experience suggests that acknowledging and responding to suffering may also reduce the risk of depression and anxiety.45

Maintaining the patient at the centre of clinical decision-making and taking time to align treatment goals with the patient’s own priorities is also likely to lead to improved satisfaction with care.

A team of empathetic and responsive healthcare professionals, in looking beyond symptom management to respond holistically to suffering, can guide patients through different issues such as coming to terms with their losses, affirming meaning and value in their lives, starting to regain a sense of wholeness, or creating a personally meaningful death.3, 43, 45-47 Families will also benefit from knowing a patient’s suffering was alleviated; this helps with anticipatory grief and the bereavement process.40

Benefits for healthcare professionals and the health system

Allowing suffering issues to be discussed can provide both patients and healthcare professionals with an opportunity for personal growth.42 Some studies suggest that being open to acknowledgement of patients’ suffering can increase healthcare professionals’ clinical effectiveness and increase personal reward in their work.42-44 However, adequate training and support, as well as the ability to reflect on their own spirituality and emotions, are important aspects for healthcare professionals, to effectively focus on suffering in others without it leading to professional and personal burnout.42, 44

Acknowledging and responding to the suffering of the patient may also contribute to broader benefits to the health system such as reduced health costs, reduced length of hospital stays and improved use of health resources. WG consensus

For information on how all members of the healthcare team can use appropriate behaviour, communication and referral to help patients reduce the impact of their suffering, see the section Responding to suffering.

Implications of not responding to suffering

Failure of healthcare professionals to recognise, identify or address suffering, may lead to increased distress, as patients struggle with a sense of isolation and disconnection from others who fail to grasp their despair.4, 41 This distress can impact on families too in ways described throughout this document. Patients’ trust in their healthcare professionals can also diminish. These factors may contribute to the development of clinically significant mental illnesses such as depression or anxiety disorders.45

Conversely, understanding patients better through recognition of their suffering may ensure that they are not misdiagnosed with a psychiatric disorder and consequently receive inappropriate treatment.42

VIGNETTE - Graeme

The following case demonstrates the importance of being alert to the unique concerns of the individual, and how sensitive communication can provide a framework for healthcare professionals to explore and respond to suffering.

58-year-old Graeme was a company director who was urgently referred from a country clinic to a city teaching hospital. He had a six-month history of progressive left lower limb pain and motor weakness, and upper thoracic pain. CT and MRI scans had identified a large left iliac bone mass and mid-thoracic spine mass with spinal cord compression. Graeme had a biopsy at the teaching hospital and the diagnosis was confirmed as a metastatic adenocarcinoma.  

Graeme was informed that the cancer was incurable and treatment was likely to include steroids, morphine, radiotherapy and chemotherapy with palliative intent. He became agitated and angry when potential loss of lower limb, bladder and bowel function was discussed, shouting “But this can’t happen now. It just can’t!

The oncologist listened to Graeme then responded, “I can’t imagine how distressing this must be for you. Are you able to tell me what the most urgent concern is for you right now?”

Graeme replied that he and his long-term partner, Ruth, were to be married in two weeks’ time. He said he didn’t know how he could tell Ruth about his diagnosis. After the oncologist offered to speak to Ruth, Graeme became less distressed and indicated that he wanted to find out more about what was ahead for him.

Over the next few days Graeme was treated for pain, and palliative radiotherapy was commenced. The Nurse Unit Manager noted that Graeme preferred to have the curtains drawn around his bed during the day. Although Ruth had arrived and spent most of the day in the ward, Graeme did not seem to converse much with her.

The Nurse Unit Manager introduced herself to Graeme and reflected on the speed with which he had been diagnosed and transferred to an unfamiliar environment: “So much has happened so quickly it must be hard to get your head around it.”  Graeme revealed that he felt guilty about taking so long to see the doctor about his symptoms, and that now he would be a burden on Ruth, adding “That’s if I even make it.” The Nurse Unit Manager asked “What does your heart tell you?” to which Graeme expressed a fear of dying, and the concern that the faith that had played an important part in his life wasn’t helping him handle things.

Graeme accepted the offer to speak with a hospital chaplain. Over several visits he was able to explore values and talk about regrets about the way he had lived his life, including the estrangement from his children from his first marriage. He also agreed to see the physiotherapist to better understand his current functional ability and learn about expectations for progress and any strategies to improve strength.

Despite initial reluctance to accept referral to the palliative care team he later expressed relief that he no longer had to “pretend to hold it together”. He felt that having more information about his prognosis helped him to plan more realistically for his work and finances, and make decisions about ongoing care which he chose to have back home.

After Graeme returned home, his GP provided ongoing care. The GP encouraged him to talk about what mattered to him, allowing him to discuss his grief about leaving Ruth, and lost opportunities with his children. 


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