Palliative care is a field that is rich with opportunity and the
need for clear, unambiguous and direct communication. The nature of the
illness that brings a palliative care team into the management of a
patient and family – the ‘unit of care’ – makes
it all the more likely that difficult conversations will already have
taken place. The breaking of bad news, such as the diagnosis of
metastatic cancer or WHO stage 4 HIV/AIDS, has often taken place in
suboptimal circumstances and the palliative care team sometimes has to
revisit the conversation to assist the patient to come to terms with
the diagnosis and the way the diagnosis was given.
The general practitioner is sometimes the doctor who conveys bad
news, but also receives the patient back from specialist investigation
with the diagnosis of a life-threatening condition. Both situations
require excellent communication, which the GP is well placed to offer,
as the patient feels secure with the doctor who has been responsible
for the care until then and who will continue with that care in the
future. This principle of continuing care is well established in family
medicine and primary care. The GP cares for the patient in context and
also for other members of the family who are affected by the diagnosis.
A palliative care team is sometimes available to assist the GP in
the task of caring for the patient with life-threatening disease. The
GP and palliative care team should co-operate closely to be effective.
Ideally, the palliative care team comprises four professionals working
together to provide care in all domains: the doctor diagnoses and
treats, the professional nurse administers medication and gives nursing
care, the social worker is both a counselling professional and expert
in social support, and the spiritual counsellor facilitates spiritual
care. This team needs to have special expertise and sensitivity in
communication with the patient and the family.
Good management includes excellent diagnosis and treatment of the
underlying illness, pain and symptom management and takes place in a
calm atmosphere with opportunities for the patient to spend time with
his/her family. There are a number of care needs present from the time
of diagnosis; therefore excellent communication is an early priority in
palliative care, particularly when the patient is cared for at home and
is under the care of the primary care doctor. Factors that assist with
communication should be considered.
Principles of communication
Palliative care requires effective use of communication skills
throughout the trajectory of illness and after bereavement. Effective
communication incorporates attitudes of authenticity, sensitivity,
compassion and empathy, all of which assist health care professionals
to support patients, families and each other. Some of these
communication skills are the following:
Listening. Communication
will be suboptimal without hearing and understanding the patient.
Listening allows the patient to feel that he/she is being heard, and
for the concerns and fears of the patient to be aired. The
patient’s understanding can be checked and the need for further
disclosure may be made clear.
Silence is closely linked
to listening. The use of silence as a communication tool is valuable
and offers the patient a chance to reflect on the situation and then to
ask questions or express concerns.
Attending is a skill that
follows closely on listening, and gives a clear message that the
interaction is patient centred. It is the act of being physically,
psychologically and emotionally present with the patient and the
family. Non-verbal cues such as eye contact and an open posture are
helpful.
Acknowledging is another
aspect of communication that applies to difficult conversations –
even more than other types of interaction. The validation of emotional
responses and the normalisation of these responses without a
judgemental attitude are part of this acknowledgement.
Containment of the emotional response assists patients to reflect and explore their pain and feelings. The use of a metaphorical container1
allows the emotions of these highly charged conversations to be
expressed freely while being directed into the ‘container’.
Who needs these communication skills?
All doctors need these skills, but oncologists, HIV clinicians, and
especially GPs require special competence in communication to manage
patients with life-threatening disease. If communication is poor, the
patient’s perception will be affected negatively, and tensions
may arise in the care team and family.
Doctors should take care to involve other team members in the
medical and communication aspects of the care, but the doctor’s
role requires special communication skills, particularly in the taking
of the history, which may be distressing if not done with sensitivity.
The working diagnosis may anticipate the definitive diagnosis of a
life-threatening illness; therefore careful communication is very
important at this stage.
Paediatric palliative care requires
special communication skills. When communicating with children who
receive palliative care the doctor must take account of specific
factors such as the developmental stage of the child, the child’s
level of understanding, and the child’s interpretation of illness
or treatment. Doctors may try to engage parents and the child in
decision making but face challenges when parents push their own agenda
and fail to consider the best interest of the child. The converse may
also pertain if doctors are autocratic and leave parents with feelings
of powerlessness, anger and guilt, particularly in the event of a
child’s death.
The hospice professional nurse concerned
with palliative care will visit patients at home to assess their needs
and provide nursing care. Palliative care nurses are at the forefront
of provision and monitoring of care, as they spend most of their
working time interacting with patients and family. The nurse is a point
of reference for information required by all who work with the patient
and is therefore pivotal to palliative care and a link that can either
positively or negatively affect patient outcomes.
The social worker plays a crucial role in
palliative care, but is not always fully utilised. Many doctors have a
limited understanding of the role of the social worker and believe that
they only process grant applications and child placements and perform
other administrative tasks. The training of social workers focuses on
communication and how to address individual needs. Social workers are
skilled and knowledgeable about matters pertaining to professional
counselling (involving psychological and social issues), policy, legal,
family and children’s issues and have networking skills and
access to resources. Proper attention to the psychosocial aspects of
care by a social worker can improve the quality of life of the patient
and family.
Spiritual counsellors. Spiritual care
needs require sensitive and careful consideration during the palliative
care stages of care. Patients must be assisted to explore their
feelings around the legacy, hope and meaning they attach to their
existence and illness. The patient should set the pace and extent of
the discussion. The model of spiritual life that the patient wishes to
explore should be respected. There should be a distinction between
religious and spiritual care. This is an area in which a
non-judgemental attitude in the professional carer will facilitate
communication.
If a spiritual issue arises, the GP could refer to a spiritual
counsellor to facilitate the challenging conversation in a safe
environment. Spiritual counsellors embrace the care of all patients
regardless of their religious affiliation but may not always be
available – therefore GPs and other members of the palliative
care team may be required to facilitate such a discussion.
When do we need to be aware of difficult conversations in clinical practice?
GPs and all doctors need to practise excellent communication at all
times but when dealing with oncology patients with disease progression,
children with special needs, patients who suffer abstract losses such
as loss of dignity or identity, stigma, and gender definition (e.g.
post-mastectomy or post-orchidectomy) and patients grappling with
spiritual issues, good use of communication skills is critical. Under
these circumstances patients need to be heard clearly and be supported.
Careful and thorough communication at the very first contact is crucial
and this is why the role of the GP cannot be underestimated: the trust
that is won (or lost) is key to the future communication in the
therapeutic relationship.
A method of conducting difficult conversations
NURSE is a helpful mnemonic to consider
when responding to emotions of patients during difficult conversations
at any stage of the illness.2
Naming. From observing the patient’s
response, the professional names the emotion that is being presented.
This demonstrates that the professional is present and aware of what is
happening, e.g.‘It sounds as though you are disappointed by
this’.
Understanding. During the communication
process the professional uses skills of probing, asking questions and
acknowledging what the patient says.
Respect. This is a powerful attitude in
communication. It allows patients to share their authentic emotions and
still feel accepted and valued. Acknowledging patients’ emotions
with respect demonstrates empathy. Respect undergirds all the
communication processes.
Support. Professionals in palliative care
should speak truthfully with their patients and follow up on what has
been communicated. Patients need to be reassured of available support
and assisted on how they can access it.
Explore. Professionals in palliative care
should continuously explore patients’ concerns by asking them to
share more or elaborate on something they might have shared before.2
Self-awareness and self-care
Careful and compassionate communication may be challenging but
rewarding, as the patient is better informed and emotionally prepared
for future management. Care should be taken by the supportive and
palliative care team not to be overwhelmed by the burden of emotion
that is always present in these difficult conversations. GPs and other
doctors should always work as part of a team to ensure excellent
patient management, but also to ensure that they and each member of the
team can access support whenever it is required.
Communicating with patients and their families will not always be
perfect as factors like personal choice, family relations,
inter-personal and other issues may intervene. During such times it is
important that the doctor or other palliative care team member reminds
him/herself that the most important task is to accompany individuals on
their journeys and not to take over the journey.
Conclusion
Effective communication is a consistent thread that has to be
maintained throughout all the stages of clinical care, by primary care
doctors and all members of the team, especially in the palliative
phase. Communication skills are universal and applicable to diverse
populations and settings. All health care professionals need to improve
their communication skills. Franks showed that effective communication
skills result in patient and family understanding, involvement and
co-operation as well as promoting self-esteem for the professionals
involved.3
There are often moments when professionals in palliative care do not
even need words, but have to present themselves, equipped with
effective communication skills, especially the skill of silence and
attending. This becomes a powerful demonstration and application of
presence, care, compassion and empathy.
References available at www.cmej.org.za
IN A NUTSHELL
• Palliative care is a core competence for
general practitioners and all primary care practitioners. This aspect
of practice requires clear communication with patients, family members
and professionals involved who need to understand each other as well as
possible under the difficult circumstances.
• This article discusses the use of listening,
silence, acknowledging and normalisation – some of the tools of
communication that may be employed in a palliative care consultation at
primary care level. These are specific communication skills that may be
adopted and improved on by GPs, who are at the forefront of patient
care. This article highlights these and offers an opportunity for us to
improve our patient care by better communication.
• The value of the presence of the doctor in the consultation is emphasised.
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