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Clinical guidance for responding to suffering in adults with cancer

Care coordination, referral and interventions

PRACTICE POINTS
i Following assessment and with the patients’ consent, ensure outcomes and other relevant information are recorded and communicated to other appropriate healthcare professionals.WG consensus
j Confirm which healthcare professionals can respond to the different aspects of a patient’s suffering, remembering that people may already have existing supports in the community. If a relevant healthcare professional is not available in the multidisciplinary team (MDT), the referral may be made to one outside the team (e.g. if a psychologist is not part of the hospital team, you may wish to use an external psychologist).WG consensus
k Consider appropriate referral to a non-health specific professional, such as a multicultural liaison officer, Aboriginal liaison officer or chaplain/spiritual care practitioner.WG consensus
l Consider the use of a psychological intervention designed to address psychosocial suffering or one of its domains, such as hopelessness.14-38
m Consider the use of additional supportive care options that may be available at the hospital/clinic or through support groups or spiritual networks, which patients may find beneficial.WG consensus
OTHER KEY POINTS
Complex emotional needs may be best attended to by a psychologist, counsellor or a psychiatrist.WG consensus

Discussion with the healthcare team

Record general information from patients’ suffering and spiritual assessments in their medical notes, and share relevant information with the wider healthcare team about patients’ ongoing needs.43, 58 If patients have divulged confidential information, their permission should be obtained before sharing it with others.

Listen to feedback from all members of the team, including those in non-healthcare roles to allow important insights into a patient’s wellbeing to be discussed. For example, a patient may confess to the receptionist that they are fearful or overwhelmed, but they may not feel comfortable confiding in their doctors or nursing staff.86

Discuss avenues for ongoing care, including who in the team will take responsibility for particular aspects. This could include referral outside of the healthcare team.

These strategies will help the team address suffering more effectively and ensure that this aspect of care is not overlooked or doubled up.

Discussion with patients and families

Discuss the suggested strategies for care with patients, as well as with families if patients prefer and consent to this. There are diverse definitions of family in Australian society and it is important to acknowledge that family may mean different things to different people. It is important for healthcare workers to use inclusive language and be mindful that family may include Lesbian, Gay, Bisexual and Transgender (LGBT) partners, step parents/siblings or extended family and friends. These discussions should include information about treatment, side effects, referral to other healthcare professionals, how aspects of suffering might be alleviated, and how spiritual needs can be incorporated into care. It is important that both patients and their families are told the truth about their diagnosis and treatment options.

Allow patients and family members to ask questions and explain why some treatment options may not be available to them.

In many cases it may be useful to provide information on support groups and telephone support lines that provide afterhours support to patients, families and carers.

Agree on a plan of action, including how the patient is to be referred to other healthcare professionals, i.e. will they make contact themselves or will the healthcare team organise the referral.

Consideration of referral

Depending on patients’ needs and the expertise of the healthcare team, it may be appropriate to refer them to other healthcare professionals outside the team, including those trained in spiritual care. Patients may also be referred to healthcare professionals with expertise in specific psychological therapies designed to reduce suffering.9

Establishing optimal methods for referring patients is vital for ensuring good psychosocial care for patients,1 although local availability may limit options. See the Referral flowchart for recommended considerations and referral to different healthcare professionals to ensure patients’ suffering and their spiritual needs are adequately responded to.

Where people are from culturally and linguistically diverse backgrounds, qualified interpreters should be engaged as a part of care coordination to help patients understand their diagnosis and treatment and to assist in navigating the health care system.

For further information about referral for broader psychosocial care, see the Clinical practice guidelines for the psychosocial care of adults with cancer (2003).1

Referral options

Physical issues

For physical issues, a physiotherapist, speech pathologist, dietitian, occupational therapist, pain specialist or palliative care specialist may be required.1

Social or emotional issues

For social or emotional concerns, a social worker, hospital liaison officer, psychologist, counsellor or spiritual care practitioner may be helpful.8,58 In the case of severe anxiety or depression, which may require pharmacologic psychiatric intervention, a referral to a psychiatrist is recommended.58

Palliative care

Palliative care aims to relieve the suffering of the whole person, and may represent a therapeutic option to the suffering patient. The World Health Organization recommends application of palliative care principles “as early as possible in the course of any chronic, ultimately fatal illness”.73

Peer support

Support groups and one-on-one mentoring may offer the benefits of sharing, insights, communication and camaraderie, and often provide ongoing companionship for people following their treatment.64 It should be noted, however, that some patients may find support groups difficult when they are confronted by other people's illness.8 Groups may be open to general or specific cancer populations, for example, based on cancer type, age or cultural background. Some groups are also open to, or just for, partners or carers. Groups may be available face-to-face, via telephone or online. These are often organised by hospitals or Cancer Councils. Cancer Councils and some other tumour-specific consumer organisations also provide one-on-one mentoring between trained volunteers with a personal experience of cancer and current cancer patients.

Some hospitals have volunteer visitors who can sit with patients, help pass the time, chat, or even offer foot and hand massages.

Spiritual matters

For matters of spiritual distress or despair, a spiritual care practitioner from the hospital, a representative from the patient's religious community, or a community elder should be contacted with the patient's permission. Ideally the healthcare team can then collaborate with them.58

Encourage patients to continue their religious or spiritual rituals, and offer the support of a spiritual care practitioner and/or a religious leader or multicultural or Aboriginal liaison officer or Aboriginal elder in the local community.54, 67 Find out what is required for any ritual practices. For example, can patients access the hospital prayer/quiet room or sacred space, or do they just require some space near their bed?94 Can allowances be made for the type of ritual requested, such as a smoking ceremony, WG consensus use of a prayer mat94 or the burning of incense?95 Does the patient want solitude or the company of others? Can flexibility be given to the number of visitors allowed at one time?96, 97

Acknowledge that for some patients, getting in touch with their spiritual side may not be through formal religious ritual, but through creative pursuits such as listening to music, reading, journaling or art.54, 67

Provide written information that helps to instil hope and provide comfort for the patient.64 An example is Spirituality and Health from American Family Physician.

VIGNETTE - Lara

The following case demonstrates a dual approach to responding to suffering.

Lara was a 69-year-old married woman with advanced melanoma who recently celebrated the birth of her third grandchild. Her four young adult children lived both locally and several hours’ drive away.

At her initial assessment the nurse identified a range of physical symptoms requiring attention. Lara’s low mood and pervasive anxiety seemed connected to her physical pain and sleeplessness. However, although her physical comfort improved with treatment, her overall distress remained. The nurse referred Lara to a counsellor.

Lara said to the counsellor, “I don’t know how they’ll cope when I’m gone.” Acknowledging the centrality of Lara’s role within her extended and geographically dispersed family the counsellor said, “It sounds like you’ve been keeping a lot of balls in the air at once.”

From this recognition Lara went on to reflect on the multiple deaths that had occurred within this family in recent years, her sense that she was the family go-between and her overwhelming concern that her family would fragment and disintegrate after her death.


VIGNETTE - Gwen

The following case demonstrates how a referral can come about when a patient talks about spiritual beliefs and values.

Gwen was a 62-year-old single woman who was being treated by Penny, a 24-year-old physiotherapist, for lymphoedema following treatment for breast cancer. When Penny asked Gwen about her self-massage Gwen responded that she didn’t bother with it, adding “It’s God’s will that I suffer”.

Gwen was reluctant to explain her comment to Penny, saying instead “Do you believe in God? If you don’t you wouldn’t understand.” Penny responded, “I guess everyone has different life experiences and values. What matters to me now is trying to understand something which is causing you real anguish.” 

Gwen revealed that in her twenties she had had an affair with a married man, but had been too ashamed to ever confide about it to anyone. Penny replied, “I think that is too much to bear on your own” and gently encouraged Gwen to seek guidance and support from her local pastor.


Interventions

To date there has been little research on interventions that specifically aim to alleviate suffering. In the systematic review, 42 relevant studies were identified that evaluated interventions in a randomised controlled trial or controlled trial (level II and level III evidence). Of the 42 relevant intervention studies identified in the systematic review, only two addressed suffering as a target of the intervention, while the majority (n=40) were directed at its symptoms.2

Refer to Appendix 2 and to the systematic review for information about the identified studies, including the level of evidence and quality of the study.2

The studies were categorised into seven types of interventions:

  1. Psycho-educational (n=9)
  2. Meaning-centred (n=5)
  3. Stress-reduction, including yoga, mindfulness, meditation, cognitive-behavioural stress management (n=10)
  4. Hope-centred (n=3)
  5. Supportive-expressive (n=5)*
  6. Spiritual (n=5)
  7. Other (n=7)+

* Includes a paper that is also included in the psycho-educational group.

+ Includes a paper that is also included in the stress reduction group.

In favour of interventions that may alleviate suffering, the systematic review found that2:

  • Some psycho-educational interventions may positively impact on spiritual distress and hopelessness in some circumstances.
  • Meaning-centred interventions may significantly and positively impact on meaning in advanced cancer patients.
  • Stress-reduction interventions may offer a promising way of enhancing spiritual wellbeing and meaning/benefit finding.
  • Hope-centred interventions may significantly and positively impact on hope in cancer patients at different stages of the cancer continuum.

However, the systematic review determined that2 :

  • No accurate conclusions can be drawn regarding the impact of supportive-expressive therapies on factors such as hope, spiritual wellbeing, self-transcendence, and purpose in life.
  • Outcomes for spiritual interventions are inconsistent, particularly in regards to spiritual wellbeing.
  • No significant outcomes were reported for relief of suffering in other assessed interventions such as art therapy, music therapy, creative arts and writing, animal therapy and touch therapy.

Further details of these interventions can be found in Appendix 2.

Development of skills

In addition to the practice points drawn from the systematic review2 and Working Group consensus, healthcare professionals are encouraged to improve their skills in communicating with patients and families about suffering and spirituality issues.

In particular, the support of the multidisciplinary team (MDT) is very important. Facilitating the discussion of complex cases or mentoring by drawing on the expertise within the MDT is suggested. Healthcare professionals can also draw on the skills and experience of chaplains and/or spiritual care practitioners to assist in their development of skills. Taking the time to learn about the nature and manifestations of suffering, and its typical effects at different stages of cancer, either individually or within the team can benefit one’s clinical practice. Further, healthcare professionals are encouraged to explore their own experiences and views of suffering and how this may impact on their response to patients. Healthcare professionals may also benefit from reflection on their own spirituality and experiences of loss in dealing with suffering, especially in the cancer context where health care professionals may often be faced with the death of patients.

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