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Clinical guidance for responding to suffering in adults with cancer

Responding to suffering

PRACTICE POINTS
c It is advisable to briefly assess patients’ level of suffering, including spiritual needs, soon after diagnosis in order to triage those patients with high or urgent need for support or intervention. Additional assessments are advised at readmission, change in prognosis, at the end of a treatment protocol and at end of life.8-11
d Consider using a validated assessment tool or incorporating open questions relating to suffering into a general conversation about care (See Appendix 1).WG consensus
e Determine patients’ needs for their psychosocial care and establish the personal resources and support networks they can draw on.11, 12
f Demonstrate an ongoing openness to listening and responding to patients’ and families’ suffering by acknowledging the issue, normalising their feelings, showing empathy and inviting patients and family members to voice concerns as they arise.3, 5, 10, 13
g Consult with family members, if available and with the patient’s permission, to obtain further information about the patient’s spiritual beliefs, to assist in their spiritual care.WG consensus
h Acknowledge patients’ and families’ different cultural and religious needs, and accommodate these where possible while recognising one’s limitations in knowledge or skills.WG consensus
OTHER KEY POINTS
Both clinical and non-clinical staff can play an important role in reducing suffering through small positive actions that show regard for patients and families.WG consensus
Establishing trust with patients and families helps to build a rapport with them and may facilitate conversations about suffering and spirituality.WG consensus
The support offered to patients may be in the form of interaction with other people, written information, referral to other healthcare professionals, supportive care interventions or a spiritual care adviser, or encouragement of continuing spiritual practice.WG consensus

Introduction

Suffering can be acknowledged and ameliorated in different ways, from indirect, small gestures,4 to direct attempts to respond to concerns through observing, questioning, discussing, listening and referral. Although healthcare professionals are encouraged to respond to suffering, no individual – or even the healthcare team as a whole – should assume responsibility for overcoming patients’ and families’ suffering and spiritual challenges.9, 54 Often the problem of suffering does not need to be solved but simply heard. WG consensus

All staff coming into contact with patients and their families can play an important role in reducing suffering. This includes not only healthcare professionals but also receptionists, orderlies, cleaners, volunteers, security staff, drivers and other support staff. While non-health professional staff are not expected to address suffering or spiritual issues clinically, their interactions can impact on patients’ experiences and their feelings of wellbeing and worth.

Examples of small positive actions include communicating with patients politely and warmly; acknowledging their presence and their situation;3, 12 comforting patients if they are nervous or upset; apologising if there are delays; complimenting patients; and briefly conversing with patients on non-medical topics, such as family, hobbies, work or interests.4, 8, 76 These actions show respect and help to build rapport.3, 12

For healthcare professionals, directly addressing suffering is an element of providing holistic care. Although it requires prioritisation, awareness and time,47 showing understanding, empathy, compassion, care and kindness are key components of responding to suffering.4, 12, 64, 77

In many hospitals and cancer centres, a multidisciplinary team (MDT) is available to support not only patients but also team members.54, 66 Spiritual care practitioners should also be available for support when appropriate.78 As such, addressing suffering becomes the concern of the whole team. Where an MDT does not exist, efforts should be made to ensure the needs of patients and families are not overlooked.

Assessment of suffering and spiritual needs

Awareness of behaviours or verbal expressions that may indicate suffering can help alert professionals to individuals in need of a comprehensive assessment of suffering. Through use of compassionate questioning, empathic comments and acknowledgement, healthcare professionals can identify those patients in need of particular support or intervention.

Methods of assessment

Healthcare professionals are encouraged to use a simple but comprehensive assessment tool for assessing suffering in patients.9 Where time is limited a brief assessment can be conducted, with a detailed assessment limited to patients who are thought to require further support. Alternatively, an informal assessment, which involves listening to patients’ stories and interpreting their issues, can be done at any time.

As the experience of suffering is entwined with culture, it is important to consider the cultural context in which assessment tools have been developed and validated. For example, measures developed in a Christian context may not be appropriate for those of a different faith or who do not identify with any formal belief system.79

Assessment tools

A number of tools have been developed to assess suffering, its synonyms and/or its symptoms. The difficulty of articulating suffering should be taken into account when considering the appropriateness of tools. Assessment in a clinical setting is ideally supplemented by open ended questions and by being alert to non-verbal and verbal cues of the patients.

The tools evaluated in the systematic review had substantive information about their psychometric properties available and were tested in clinical trials.2 They have been categorised depending on the constructs they measured: Suffering; Hopelessness and demoralisation; Hope; Spiritual wellbeing; Meaning; Quality of Life including a spiritual/existential component; and Distress in palliative care. The tools were assessed against their appropriateness, reliability, validity, responsiveness, precision, interpretability, acceptability and feasibility.80

The appropriateness of any measure is dependent on a range of considerations including the context in which it is to be used (e.g. early-stage disease vs. survivorship vs. palliative care), its psychometric properties in this context, respondent burden, and the desired mode of administration. It should be noted that the evaluated measures have been used primarily for research purposes rather than being applied in clinical practice.

A number of tools are listed in Appendix 1. These are suggested based on their suitability and validation to measure suffering or its various synonyms in cancer populations. While these tools constitute sound measures of suffering, other measures could also be considered to suit clinical practice goals. The systematic review includes details of all 58 measures that were assessed for their usefulness in measuring aspects of suffering.2

Informal assessment

Informal assessments can be based on conversational questions about suffering and spirituality and observations of suffering in patients.5, 12, 81 Such an assessment allows healthcare professionals to concurrently respond to elements of suffering, provide spiritual care and increase patients’ coping ability by listening, providing input and acknowledging the importance of the issues raised.8, 64 Examples of these questions are provided in the section: Having a conversation about suffering.

Patients can also give indirect clues about suffering or spiritual needs, for example, through body language or items at their bedside such as religious paraphernalia or self-help books. Patients’ behaviour, words or tone may indicate their need or desire to talk about suffering.43, 81 These clues can provide healthcare professionals with openings to a conversation.

Timing of assessment

Although a full assessment of suffering takes time, it should be a priority once a patient has been identified as being in need of detailed assessment.47 WG consensus If time is critical, a couple of minutes can still elicit useful information and be of benefit to patients.54 There is a perception that the healthcare system does not allow healthcare professionals the time or emotional resources to deal with the suffering and spiritual care of patients.4, 6, 43, 45, 47, 58 However, assessment of these issues should occur as soon as possible after diagnosis, and be repeated at least at the end of treatment, at recurrence and during the end of life stage. Reassessment of suffering should also be considered when life or family circumstances change, for example when a person ceases working, a relationship breaks down or a family member dies. Early assessment and discussion of issues allows the healthcare team to identify and address a range of problems early on, to gain an understanding of patients’ coping ability, to track their emotions, spiritual wellbeing and different needs over the course of their illness, and to arrange follow-up care.8, 13, 43

Understanding the possible emotional and spiritual responses that patients may have at different stages of cancer can help healthcare professionals anticipate when individual patients are likely to need more support.9 For example, studies have shown that acknowledging a terminal prognosis earlier rather than later ultimately contributes to relief of suffering.4 The recognition of death can offer a shift in perspective from small concerns to a deep appreciation of life.10 For those approaching death, issues such as forgiveness and reconciliation, and finding meaning and hope, often become critical.10, 57 Understanding possible spiritual responses may also assist healthcare professionals in understanding the impact of spirituality on decision-making and highlight how unexpected choices of the patient may reflect their spiritual beliefs.

For many cancer survivors, existential concerns may arise after treatment.8 This can be particularly difficult as family, friends and acquaintances often expect that cancer survivors will easily put their experiences behind them and resume life as it was before treatment.

Choosing the right place

Healthcare professionals need to be mindful of where discussions about suffering and spiritual issues take place.8, 73, 82, 83 Ideally patients have privacy from other patients and they should be asked if they want family present.84, 85 The meaning and structure of ‘family’ may vary significantly for different patients and healthcare professionals should avoid making assumptions. Sometimes a private setting is not available or the patient’s condition makes it difficult to move to a private room. In such cases, acknowledging the setting and asking the person if they wish to talk now or at some other time is necessary. The issues may be so pressing that the patient prefers to talk, even in a suboptimal setting. WG consensus

Patients should be as comfortable as possible; if they are in physical discomfort, they will find it harder to focus on non-physical aspects of suffering.12, 71, 72 Being seated with the patient and having a similar eye level is important.85

Having a conversation about suffering

Although opening a conversation about suffering or spirituality may seem daunting, simply asking the patient if the topic can be brought up is suggested.8 Patients often do want to talk about existential issues, including death, with healthcare professionals.10, 13, 39, 46

Opening questions

These might provide insight into how patients are affected by their illness and what influences their medical decisions and outlook:

  • What should I know about you as a person to help me take the best care of you that I can?85
  • What has been the hardest part of this experience for you?57
  • Who else or what else will be affected by what is happening with your health?85

Open-ended questions

Generally, open-ended questions encourage patients to express themselves more clearly and in more detail. These are different from closed questions, which may only elicit one- or two-word responses. Open-ended questions are more conversational and suggest a genuine interest in the topic. Even though healthcare professionals may have a suggested series of questions to ask, letting the patient guide the conversation may allow exploration of their concerns more naturally and help them to better understand their troubles.57, 86

Content of questions

A number of authors provide guidance as to the types of questions that will help enable patients to explore or share concerns, including those about spirituality and meaning.9, 12, 39, 42, 54, 57, 64, 85 Depending on the time available and the flow of the conversation, all questions listed here need not be asked, nor do they need to be asked in the order presented.

Questions related to spirituality

Further questioning could focus more specifically on spirituality and meaning. The following list of questions is not exhaustive but is drawn from Puchalski’s Faith, Importance, Community, Address/Action in care (FICA) tool,54 evaluated by Borneman;87 questions included in the Report of the Consensus Conference for Improving the Quality of Spiritual Care as a dimension of Palliative Care88; the HOPE questions described by Anandarajah;81 and related questions from Ohlen,12 Lo57 and Chochinov.85 These spiritual assessment tools were not included in the systematic review2 because they were not designed to assess suffering specifically, nor are they validated with measurable outcomes. However, as prompts, they can potentially elicit useful information from patients.

For simplicity, the FICA tool headings are used to categorise the questions.

Faith, Belief and Meaning:

  • Do you consider yourself spiritual or religious? Do you have spiritual beliefs that help you cope with stress?54 What gives your life meaning?54
  • Are spirituality or religion important in your life? How well are those resources working for you at this time?88
  • What are your sources of hope, meaning, comfort, strength, peace, love and connection?81
  • What do you hope for?57

Importance and influence:

  • What importance does faith or belief have in your life?
  • What role do your beliefs play in your healthcare decision-making?54
  • What aspects of your personal spirituality and practices are most helpful to you?81
  • What are the things at this time in your life that are most important to you or that concern you most?85

Community:

  • Are you part of a spiritual or religious community? Is this of support to you and how? Is there a group of people you really love or who are important to you?54
  • Are you involved in an organised religion?81
  • Who else should we get involved at this point, to help support you through this difficult time?85

Address/Action in care:

  • How would you like your healthcare provider to use this information about your spirituality as they care for you?39, 54

Questions relating to a person’s sense of self-worth and meaning

The following questions may assist in opening a discussion to help a person re-establish their sense of value and meaning:42, 64

  • What is a personal quality you cherish about yourself?
  • What is a joy you have in your life right now?
  • What was the best period of time or the best thing that happened to you in your life?
  • What are some of the lessons you’ve learned in life?
  • Who or what have you believed in or loved? (This could be faith, ideology, institutions, people, places, music, ideas)
  • What are the things you have done – created, accomplished, journeys?

Questions relating to guilt and shame

Some patients may feel guilt or stigma associated with the cancer. This can contribute to feelings of low self-worth and shame, and may affect their outlook and their ability to cope. Patients may think they deserve the cancer due to their lifestyle or they may worry that it is caused by past wrongdoings.6, 9 Some careful questioning can help elicit if these are concerns:

  • This is obviously distressing. I wonder if you feel able to share with me some of the things that are tough for you at present.
  • Over time, many people have told me that the cancer diagnosis has particular meaning, maybe because of cultural or religious beliefs, or even past experiences. Sometimes people tell me about distressing feelings like guilt or even shame. Are these sorts of issues a concern for you?

Acknowledging changes in the patient

Changes in patients should also be acknowledged. These changes, which might include their experience or expression of suffering, their need to find meaning, or their ability to cope, can fluctuate. Healthcare professionals need to acknowledge and address these changes as they happen.11

Examples:

  • This must be frightening for you. I can only imagine what you must be going through.85
  • It’s natural to feel pretty overwhelmed at times like these.85
  • You seem more fearful/at ease than the last time we spoke. What has changed for you? WG consensus
VIGNETTE - Maria

The following case demonstrates the importance of support networks for people with cancer, and how carers can be affected by suffering too.

Maria was a 40-year-old woman who had recurrent glioblastoma multiforme, which resulted in severe expressive dysphasia and child-like behaviour. Maria’s husband had not coped as her carer and had abandoned her and their 12-year-old daughter, leaving her parents to look after them both.

Maria’s parents took her to an oncologist for a third opinion. She had been treated elsewhere with surgery, radiation and chemotherapy, but because of her disabilities and her slim prospect of recovery, palliative care had been recommended. “That’s a very sad story. How are you coping?” the oncologist asked Maria’s parents. “Well, we are managing OK, but we think Maria’s actually improving. She says a few words to us now and she is eating better.” “How about we re-assess her with another MRI scan?” The oncologist suggested.

Feeling supported by this oncologist, Maria’s mother revealed that they had not seen the palliative care team or any other doctors apart from her GP for the past eight months because they felt the other specialists had given up on Maria. “We pray every day for her,” her father said, “We don’t want to give up hope.”

The oncologist asked, “Does praying give you the strength to cope?” Maria’s parents agreed that their faith was an important part of their lives. “It’s important to keep praying because of the support it gives you,” the oncologist responded. He also explained the benefits of palliative care for both Maria and themselves, reassuring them that seeing the palliative care team did not mean that they were being abandoned by the medical team.

Having felt heard and more hopeful about the options for Maria, her parents agreed to talk to the palliative care team with the oncologist once the results were back from Maria’s MRI scan.


Communicating and connecting with patients

Supporting connections

Being connected to other people and life’s activities can help reduce suffering and existential loneliness. The healthcare team can offer this connection, and may be able to facilitate further connections, such as with family and other patients.11, 12 These relationships, even if new, may offer joy and pleasure, and may reduce a person’s vulnerability to suffering.12, 61

People who are dying commonly want to know that they won’t be forgotten. It is helpful to explore the different relationships and affiliations they have or have had and to reassure them that they will be remembered by others.43, 67 This affirmation can improve quality of life.10 Facilitating communication between family members and patients can help comfort the patient too.40 Even patients who have few personal connections can be encouraged to reflect on the impact that they likely left across many years of life. These, for example, could be among friends and relatives, at school, work, or in the community.

Establishing trust and unconditional acceptance

A caring, compassionate and attentive attitude will promote the development of a trusting relationship, enabling healthcare professionals to recognise and respond to spirituality and suffering.3, 39, 42, 57, 77 Being fully present is critical,8, 12, 39, 43, 47, 54, 58 as is demonstrating that patients have been heard.43 This is important for physical suffering too, as having someone who is willing to listen may reduce the pain threshold to a tolerable level.43 Such care and comfort can help people be eased or lifted out of their suffering.12, 43

Strategies to establish trust and rapport with patients include:

  • using terminology patients and families understand54
  • relating to patients with humility, respect and care rather than with authority42, 54
  • affirming patients by communicating with them as a person – a fellow human being – rather than as the illness they have, and telling them that you care3, 4, 12, 43, 45, 54
  • not being dismissive, distracted by electronic devices, or appearing not to have time available for the patient3, 39WG consensus
  • respecting different social and cultural behaviours and values39
  • listening to and respecting patients’ view or feelings even if they are different from one’s own3, 39, 43, 57
  • helping patients feel safe in a new and unfamiliar environment,3 and
  • giving hope to patients and families, including the assurance they will not be abandoned even when cure is no longer possible.3
VIGNETTE - Warwick

The following case illustrates the compassionate role of healthcare professionals to ensure close connectedness and a mutual understanding with the patient about what they’re facing.

Warwick was a 53-year-old man having concurrent chemotherapy and radiotherapy for a squamous cell carcinoma of the pyriform fossa. When the radiation therapist greeted him on his arrival for his third treatment session, Warwick averted his gaze and said, “Let’s get on with it.”

The therapist asked him to sit down and pulled over a chair to sit next to him. She said, “This treatment is really hard. A lot of people really struggle with it. I know that sometimes it can feel as though you’re just a number, but I really want to hear how you’re doing. And I’m putting it on the table right now – you don’t have to pretend it’s OK if it’s not.” 

Warwick looked at the therapist and nodded. “I’ve had a few struggles in my life but I think this is one of the toughest. It’s good to know others find it tough.”


Responding with empathy

To show active listening, respond to patients with empathy.55, 57, 85 Even if there is not an answer or a solution to the patients’ needs, acknowledgment shows that the message has been heard.39, 43, 47, 57

Being open to a patient’s particular way of expressing their suffering, hearing about their anger, guilt, fear, loneliness, despair and anxieties about death and other issues, and acknowledging these emotions but not judging them, can help immensely.10, 43, 55, 58, 64

Normalising patients’ concerns may also permit the patient to talk further57, 85, 86 and will help uphold their dignity.89

Some suggested responses include:

  • That is an important, profound question, but I don’t know the answer to it.43
  • That sounds like a painful situation.57
  • Sometimes it must feel as though it’s a terrible dream. WG consensus
  • I imagine it would be puzzling not to know.57

Avoiding premature reassurance

When patients question their worth, wonder whether they’re being punished for their illness, or voice shame, it is often instinctive to want to reassure them immediately that this is not the case. To patients, however, this premature reassurance may seem dismissive and they may feel misunderstood. This can lead them to not talk further about their concerns. Healthcare professionals may not only have lost an opportunity for patients to unburden themselves of guilt, anger or unexpressed worries,43, 57 but may unwittingly emotionally distance themselves from patients.43, 45

When healthcare professionals do not rush to reassure patients, it suggests that their comments or questions are not too trivial or too large to be dealt with.86 Discussing suffering does not make it worse WG consensus and acknowledging the issue can be beneficial and therapeutic to the patient.57

VIGNETTE - Trudi

The following case shows the importance of acknowledging a patient whose behaviour or dialogue reflects an aspect of suffering, without trying to prematurely reassure them that there is nothing to worry about.

Trudi was a 34-year-old woman with advanced cervical cancer. She had a recto-vaginal fistula and was ashamed of the odour in her room, apologising to the healthcare professionals who came into her room. When one of the nurses who came to check on her heard Trudi apologise, she sat down and said: “I can’t imagine how hard this is for you. What’s the thing that upsets you the most?”

Trudi expressed gratitude to be able to talk about her fear that she was disgusting. She said, “When the other nurse said she couldn’t smell anything, I knew she was lying and it made me feel even worse – as though I was too disgusting to even talk to.”


Supporting appropriate hope

Patients and families both need some degree of hope. Even in severe illness, people can still have hopes, although these may change over time.10 Depending on the situation, hopes may be long-term or for day-to-day wishes. For example, a patient might hope for pain to be controlled, for family members to understand and forgive them, or to be able to attend an important occasion such as a wedding. WG consensus

Sometimes, however, patients and families may have unrealistic hopes. They may deny the reality of the situation, and this may cause them to make treatment decisions or request certain interventions that the healthcare professional may disagree with or believe to be futile.57 It is important to show respect to patients and to acknowledge the significance of their beliefs if this is influencing their decisions about care. It will also help if healthcare professionals align their hopes with the hopes of the patient and family. This can assist them to discuss other possible hopes that are more achievable and realistic.54, 57

VIGNETTE - Greg

The following case demonstrates the importance of acknowledging and supporting hope for a patient and their family, and responding to treatment decisions.

38-year-old Greg had a metastatic colorectal cancer that had failed to respond to several lines of chemotherapy including a recent trial. Greg was devastated to receive the results of his latest scan which demonstrated further disease progression. He said to the oncologist, “I just don’t accept that there are no other options for me. I have a wife and two young children.”

The oncologist was silent for a moment, then leaned forward and said, “Greg, if anyone could have beaten this by sheer force of willpower, it would have been you. You have soldiered on despite some dreadful side effects. But it wouldn’t be right for me to just keep giving more and more treatment when it has made you so sick and not helped the disease. I would give anything for it to be different. But now I think we have to focus on other ways we can help you and your family.”


Silence in communication

Although it is important to acknowledge patients, sometimes silence and stillness can be a significant communication tool.39, 53, 64 Simply being there for patients and being open to their pain can help them through a crisis.43, 90

Back et al (2009)91 suggest there are three types of silences, all of which can affect communication:

  • Awkward silence – intention of silence not clear; may reflect distraction, hostility, judgment, ambivalence, disapproval or withholding
  • Invitational silence – allows the patient time to think about or feel what is happening, often after an empathic response
  • Compassionate silence – using a spontaneous moment in a conversation that allows for a shared feeling between a clinician and patient, or for the clinician to generate compassion for the patient.

If silence has the right intention it can be meaningful or therapeutic for the patient and for those who care for them.91

Difficulties communicating

There are various reasons why discussions about suffering or spirituality may not take place or may be awkward for both healthcare professionals and patients. Being aware of these barriers can help healthcare professionals overcome them. Importantly, members of the healthcare team should offer patients and families multiple opportunities to talk about their spiritual distress in the event that they are concealing it.5, 39

Health professional barriers

Feeling overwhelmed

Sometimes healthcare professionals can feel overwhelmed by the suffering of their patients and their inability to fix it. This feeling of powerlessness can contrast sharply with the more usual task-driven focus in clinical care.3, 4, 6, 45, 58 A balance needs to be found between offering emotional or spiritual care and doing the right thing by the patient,45 and yet maintaining objectivity, wellbeing and resilience.45

Fears

Many healthcare professionals find it difficult to discuss and ask questions about patients’ suffering and spirituality due to a variety of fears.39, 43, 45, 58, 65 They may feel particularly unskilled and uncomfortable when patients are near the end of life and have intensified spiritual and religious concerns.57 They may believe they are honouring a patient’s dignity and privacy by not talking about suffering and spiritual issues.45 Some fears include:

  • Having their own emotional responses triggered, or responding to patients based on their own experiences rather than objectively43, 45, 47
  • Being asked questions about their own spiritual beliefs and practices54
  • Not being able to cope with patients’ strong emotions such as guilt, anger or anxiety, and
  • Being blamed for upsetting the patient43 or making the suffering worse WG consensus.

Patient barriers

Suffering is perceived to be secondary

Some patients and families may feel that spirituality and suffering are an inevitable part of the illness, so they may not raise these issues even though they are thinking about them.6 Healthcare professionals who indicate an openness and willingness to hear about suffering help validate patients’ and families’ experiences and legitimise their desire to raise spiritual concerns.6, 13, 57 Most patients are open to discussing such topics with healthcare professionals who show interest, empathy and respect, who communicate well, and who take time to listen.39

Concern about healthcare professionals

Some patients may avoid talking about suffering because they feel it may cause anxiety for staff and they don’t wish to be a burden;10, 47 they do not think it is appropriate in a clinical context;54 or they do not think staff have the knowledge, courage, understanding or time to deal with it.46

Patients may also detect non-verbal cues related to personal bias, judgmental attitudes or avoidant behaviour that the health professional may hold.3, 43 This may prevent them feeling safe enough to talk about their emotional or spiritual needs.42, 43

Not wanting to talk

Some patients do not wish to talk about their suffering, emotions or spirituality or receive spiritual care at all.8, 45, 66 This may be because of a desire to take control of their situation8, 45 or because their feelings are intensely personal and they don’t feel comfortable sharing them.5, 57, 66 Sometimes patients are simply too exhausted to express themselves46 or they need time to deal with their situation before talking about it with others.8

Patients may also feel unable to discuss these issues with their family.8, 41, 43 Wanting to protect the family from difficult discussions is one reason.8 Friends and family – and indeed patients themselves – may attempt to maintain a positive outlook, but in some cases this can instil a sense of unrealistic hope that can disguise suffering or make it difficult to articulate.10

Another important aspect to patients feeling comfortable about discussing their concerns is their desire for a shared understanding with the listener about what they are going through.8, 46, 55 If patients sense indifference, they are likely to feel lonely or let down. This may then contribute to increased suffering, and an inability or reduced desire to talk about their suffering or spiritual issues in the future.8, 46, 55

Language difficulties

Where people are from culturally and linguistically diverse backgrounds language may be a barrier to articulating suffering. Where this is the case, qualified interpreters should be engaged as part of care coordination to help patients understand their diagnosis and communicate their needs.

When patients can’t talk

If a patient is physically unable to communicate, it is important for healthcare professionals to talk with family, if available, to try to establish any beliefs and wishes that are a true reflection of the patient and not necessarily the relatives.57 This is particularly important if an advanced care directive has not been developed.

Further reading
Eliciting and responding to emotional cues86 and Breaking bad news92 provide evidence-based guidance on effective communication between patients and healthcare professionals, which may be of use when discussing suffering and spirituality issues. Handbook of Communication in Oncology and Palliative Care (2010)93 has more information on communication skills.
VIGNETTE - Sally

The following case demonstrates how healthcare professionals can give a patient time and space to take in the frightening news of a terminal cancer diagnosis, complicated by concerns about financial and family security.

A 51-year-old divorced mother, Sally, was diagnosed with a poorly differentiated squamous cell carcinoma in the anus, after 18 months of progressive left buttock neuropathic pain, increasing left lower limb weakness and urinary stress incontinence.

During her first consultation the oncologist, Dr Edwards, listened to Sally’s account of the symptoms she had experienced and the time taken for the diagnosis of cancer to be made. Sally expressed anger about the delay in diagnosis, saying “I wouldn’t be in this situation now if the doctors had picked this up earlier.”

Dr Edwards decided that the first priority was acknowledging Sally’s feelings rather than telling her that the delayed diagnosis had probably not affected the prognosis. Dr Edwards leaned forward and said: “I am so sorry that it took so long to work out what was going on. I wish I could say something to make it less painful.” She paused before asking: “Are you able to tell me what is most distressing for you at present?” Sally was then able to discuss concerns about finances and the desire to return to work and her distress about stress incontinence.

The continence nurse discussed strategies to assist Sally, acknowledging that incontinence posed major challenges both occupationally and socially. Achieving pain relief was complex, but Sally found that the persistence and empathic approach of the palliative care team made her feel valued and cared for: “You know, they make me feel like I am the only one they have to treat. After all this time I really do feel that someone is finally looking after me.”

Once her pain was better controlled, Sally expressed apprehension about talking with her daughter about her condition. The social worker met with Sally and listened to her concerns, telling Sally that “This is such a hard conversation, and no mother wants to have it.” She then provided information for Sally including community services and links to websites and other resources.


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