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Chapter 2: Communication and Collaborative Practice in the Palliative Context

Learning objectives for this chapter

By the end of this chapter, we would like you:

-To understand the multidisciplinary context of palliative care, including the variety of overlapping roles and responsibilities of different professionals in palliative care settings.

-To describe the variety of barriers to effective communication in the palliative context.

-To identify challenging communication situations relevant to the palliative care context, and to describe the communication skills nurses may use to respond positively to these.

-To list the facilitative skills palliative nurses can use to improve their communication.

-To describe the key palliative care planning documentation which can be used to support and enhance communication and collaborative practice in the palliative context.

The multidisciplinary nature of palliative care

Palliative care is fundamentally multidisciplinary in nature. This means professionals from a range of disciplines work collaboratively to provide care to a single patient and their family. Remember: professionals who provide palliative care include general and specialist nurses and doctors, allied health practitioners, counsellors / psychologists, hospice staff, respite staff, grief / bereavement workers, chaplains and complementary therapists etc. Each of these different professionals has different roles and responsibilities when planning and providing palliative care; consider the following case study example:

Example

Martin is a forty-five year old man who was involved in a road traffic crash. Due to traumatic acceleration-deceleration forces involved in the crash, Martin sustained a catastrophic neurological injury, a diffuse axonal injury (DAI). Martin is not expected to recover, and his family agree to palliative care. The staff involved in the planning and provision of his palliative care, and their roles and responsibilities, are outlined in the following table:

Profession

Roles and Responsibilities

Doctors

Contribute to Martin's ongoing assessment; plan for Martin's care; evaluate Martin's care; provide support and information to Martin's family; ensure Martin is comfortable up until death, etc.

Social workers

Provide Martin's family with written information / resources; counsel those experiencing complex emotions; organise financial support for Martin's family; arrange travel for Martin's parents / siblings; coordinate participation in case conferences between the palliative team and Martin's family, etc.

Pastoral carers

Provide spiritual support to Martin and his family; assist with funeral arrangements; facilitate end-of-life / death rituals as desired by Martin and his family, etc.

Communication in the palliative context

There is research to suggest that poor communication can have significant negative consequences for the patient and their family - for example, it causes psychological distress, results in poor compliance with treatment, reduces quality of life and increases dissatisfaction with care. Poor communication is the cause of a significant number of complaints related to end-of-life care in the UK.

Communication in the palliative care context can be complex. Nurses in the UK frequently use 'blocking behaviours' to prevent further discussion about, and exploration of, a patient's issues and concerns related to palliative care. These are often unconscious behaviours, and used with the best of intentions, but they can have a variety of unintended negative consequences. Consider the following case study example:

Example

Chi-Wah is a graduate nurse working in a hospice for young adults. One of his patients is Aubrey, an eighteen-year-old woman with terminal brain cancer. Aubrey has been offered a course of chemotherapy to slow the progression of her cancer and to extend her life; however, she is not sure whether to proceed.

"I'm worried about the chemotherapy," she tells Chi-Wah. "One of the other patients told me the side effects are horrible, and that they'll impact negatively on my quality of life."

"Everybody responds differently to chemotherapy," Chi-Wah says to Aubrey. "You may find you don't get any side effects, or that they aren't as bad as you expect. Besides, there are lots of things we can do to help with any side effects you do experience."

In the above case study, the patient hints at her concerns about receiving chemotherapy. The palliative care nurse attempts to reassure her, but in doing so blocks further discussion about, and exploration of, her concerns. Essentially, the nurse normalises and minimises the patient's concerns. This approach is likely to leave the patient feeling unheard, frustrated and upset. Patients in palliative care settings must be provided with complete, accurate information about their condition - even if this is likely to cause them some distress.

It is important to highlight that nurses working in the palliative care context are often required to 'break bad news' to the patient and / or their family. These can be some of the most challenging conversations a nurse will have with a patient in the palliative care context. When conducting these conversations with a patient and / or their family, a nurse should:

  • Provide factual information, and relate this information to the individual patient.
  • Provide information in small 'chunks', and then check for understanding.
  • Ensure the setting in which the conversation is to take place is appropriate.
  • Gain an insight into the patient's overall understanding.
  • Invite the person to opt out of full disclosure, if they choose to do so.
  • Handle these conversations with empathy.

In addition to speaking with patients about their death, it is essential that nurses working in the palliative care context speak with patients about their wishes for palliative care - including their wishes for care during death. Contrary to popular belief, research suggests that patients often find it reassuring to speak about and plan for their own death, particularly with trusted health care professionals. Early discussions about end-of-life care are important, because as a patient's terminal condition progresses they will often find it difficult to participate in discussions and make decisions. Before approaching a discussion about end-of-life care, it is important that nurses have some understanding of the patient's culture, their social situation, and their readiness to engage in palliative care planning.

When communicating with patients and their families in the palliative care context, nurses will often be communicating with people who are experiencing strong, complex emotions. When communicating with people who are experiencing strong, complex emotions, there are a number of important strategies a nurse can use to ensure their communication is effective:

  • Recognise the presence of the emotion.
  • Legitimise the emotion, and provide the patient with 'permission' to express it.
  • Collect important information.
  • Focus on the person's emotions, and convey empathy.
  • Apologise to the person, if it is appropriate to do so.
  • Negotiate a way forward together with the person, if it is appropriate to do so.

When communicating with patients and their families in the palliative care context, nurses may also be aware of complex situations such as collusion. Collusion occurs when people cooperate in a conspiracy in order to deceive others. As with the blocking behaviours discussed earlier, collusion is often attempted because of a misguided belief that keeping the patient uninformed about their condition and prognosis will assist with their psychological wellbeing. This often results in even more significant negative psychological impacts for the patient and hinders palliative care planning.

There are a number of ways a nurse working in a palliative care setting may manage collusion:

  • Use an empathetic approach to understand the relative's feelings about the situation.
  • Clarify the relative's reasons for wishing to withhold information from the patient.
  • Identify with the relative the negative impacts of withholding information.
  • Propose to the relative that the patient is given some awareness; explore this idea.
  • Negotiate with the relative an ongoing plan for providing information to the patient. 

Another complex communication situation which nurses in palliative care contexts are required to effectively manage occurs when a patient or relative refuses to accept the terminal nature of the patient's condition and the need for palliative care. There are a number of ways a nurse working in a palliative care setting may manage unrealistic expectations, including denial:

  • Acknowledge the enormity of the information the patient has been given.
  • Explore the patient's perspective on their condition, prognosis and death generally.
  • Gently challenge inconsistencies in the patient's perspective.
  • Propose a hypothetical question to explore the patient's goals and significant issues.
  • Offer the patient the opportunity to receive a second medical opinion if they do not accept the futility of medical treatment and the recommendation for palliative care.

When communicating with patients and their families in the palliative care context, nurses may also encounter complex questions from patients and their families. It is important to highlight that there is no clear consensus about how to respond to complex questions, such as those related to life expectancy, which have no definite answer. As a general guideline, nurses should:

  • Acknowledge the significance of the question to the person.
  • Explore the person's perspective on their condition, prognosis and death generally.
  • Avoid giving an exact timeframe, and discuss the challenges of predicting survival.
  • Explore the impact of uncertainty, doubt and insecurity on the person.
  • Offer the person continued support.

Facilitating positive communication in the palliative context

There are a number of general communication skills that nurses working in palliative care settings may use to improve their communication with patients and their families. These skills include:

  • Active listening.
  • Summarising.
  • Paraphrasing.
  • Empathy.
  • Clarifying.
  • Silence.
  • Acknowledgement and encouragement.
  • Picking up on cues. There are a number of cues which are particularly relevant to the palliative care nursing context:
    • A patient may use indeterminate statements.
    • A patient may use neutral statements.
    • A patient describes psychological symptoms, such as 'worry' or 'stress'.
    • A patient is unclear or evasive about the physical symptoms they experience.
    • A patient may be vague or indirect when answering a nurse's questions.

Palliative care planning documentation

There are a number of key pieces of 'advance care' documentation which are used to record the wishes of patients in relation to their palliative care, whilst they are still competent to make these decisions. These documents help guide nurses and other health care staff in the provision of palliative care, particularly when a patient lacks capacity to make decisions about, and / or communicate their wishes for, care provision.

There are strict rules about when and how advance care documentation is created. Advance care documentation can only be developed by a patient who is competent to make decisions. There are also rules about when and how advance planning documents are enacted, and whether they are legally-binding. Some examples include:

  • Advance statements. These are documents which indicate an individual's preference for care. Advance statements are not legally binding.
  • 'Do not attempt resuscitation' (DNAR) orders. DNAR orders authorise health care staff to withhold cardiopulmonary resuscitation (CPR), should a patient's condition deteriorate, and so allow their death.
  • Advance decision to refuse treatment (ADRT) documents. ADRT documents provide a legally-binding record of a patient's informed consent to withhold or withdraw certain treatments.
  • Proxies for health care decision making. In palliative care settings, many patients choose to assign specific decision-making rights over to a trusted person, often a relative. Powers of attorney may be:
  • Health and welfare powers of attorney, which make decisions for a patient about things such as their daily routine, where and how they are cared for, and treatments provided to sustain the patient's life, etc.
  • Property and financial powers of attorney, which make decisions for a patient about things such as collecting benefits, paying debt and selling property, etc.

Advance care planning documentation, once completed, must be distributed to all those involved in the care of the patient, both in inpatient settings and in the community (as appropriate), in addition to other relevant people such as the patient's family, primary carer and solicitor, etc. It is essential to note that a patient has the right to change their advance planning documentation at any time throughout the course of their illness, provided they retain the competency to do so.

Conclusion

This chapter began with an overview of the multidisciplinary context of palliative care. It progressed to exploring the variety of barriers to effective communication in the palliative context, the challenging communication situations nurses working in this context may encounter, and the facilitative skills nurses can use to improve their communication with patients and their families. Finally, this unit considered the key palliative care planning documentation which can be used to support and enhance communication and collaborative practice in the palliative context.


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