Good Communication is Essential

Good Communication is an extremely important component of Palliative Care. Most complaints made by the patients and the families are due to poor communication. Poor communication can have a significant negative impact on the quality of care. Communication includes breaking bad news, coping with uncertainty, hope and understanding that family also matters.

What you communicate, how you communicate, specially while breaking bad news, talking about how to cope with uncertainty, how to elicit hope and not to let it die and ensuring that family matters are essential component of communication.

Aims of communication

• Sharing information
• Reducing uncertainty
• Facilitating choice and making joint decisions
• Creating, developing and maintaining good relationships.

At the time of uncertainty the patients are always yearning to hear:-

• "No matter what happens, we will not desert you"
• "You are important to us"

Therefore the treating team has to reassure the patient as under:-

• We can relieve your pain and ease most other distressing symptoms
• One of us will always be there
• Let’s work out, how best we can help you and your family.

Patients are intelligent and smart to understand the nonverbal communication, by looking at the facial expression, eye contact, posture, touch of the person, pitch and tone of voice while conveying the message. It is always good to have a team member, who has good communication skills to talk to the patients and family members.

Components of good communication are getting started, Identifying concerns, active listening, identifying barriers to effective communication, behaviour of the patient and the family.
To summarise

• Patients, families, professionals and health services; all benefit from good communication.
• Effective communication is verbal and nonverbal.
• Use of structural approach, helps a lot, when discussing important issues.
• Elicit information by allowing the patient to talk by asking open questions.
• Active listening lets the patient know, that what they are saying is important to the listener also.
• Recognition of the potential barriers to active communication, can help you avoid them.

Breaking Bad News

How the bad news is broken can profoundly affect the patients. There is always a dilemma “to tell / not to tell, how much information the professional thinks should be shared and how much information the family actually wants; what is the right time to share the news and in whose presence. Breaking bad news is mostly upsetting for the patient and the news giver. Therefore one must take care of the following factors….

The setting:
Choose quite, comfortable environment, where there are no interruptions from staff, mobile phones and offer privacy.

Exploring patient's and family's perceptions about the illness prevents discussion on issues which are already known to the patients and identify the gaps in what they know and understand. One also has to know how much additional information; they want to know at that moment. Some patients want to know everything at once; others may not want any information at all. The right question by the doctor at that time is “would you like to know what is happening or prefer to leave it all to the doctors? If the family and the patient do want to know more, the bad news should be broken in stages.

To summarise:

• Preparation is a must before breaking bad news.
• A loved one (family / Friend) should preferably be present with the patient for support.
• Interruption should be avoided
• Ensure privacy
• Allow denial, but do not collide with it
• Allow expression of strong emotions
• Demonstrate empathy
• Never make assumptions
• Acknowledge how hard it is to live with uncertainty
• Arrange for second meeting later, if required.

Coping With Uncertanity

Patients and relatives find it difficult to live with uncertainty of their life span. The most common question asked is “how much time do I have’. This is natural, because they have lot of unfinished agenda before death. Therefore talking about the prognosis or outcome of the diseases, is very important to them.
Patient must be explained clearly that date of birth and death is always predetermined and no one can predict it correctly. There are patients who look so sick in the evening, that we do not expect them to live through the night - but they improve tremendously overnight. On the other hand, a patient we may be planning to discharge, dies suddenly. However a rough guide is as under:-

• If things are getting worse month by month - Expected life span is few months.
• If things have been worsening week after week - maybe we are planning for few weeks at a time.
• If day by day - maybe we are thinking about days,

We must acknowledge that living with uncertainty is very hard. Strategies which will help them cope in a way to preserve the HOPE should be discussed.

Hope

Hope is extremely important in choosing a direction and purpose in life. It makes people resilient to cope with adversity. Hope is also crucial to maintain psychological equilibrium. It includes-

• Experience: accepting that improvements and setbacks are part of being human.
• Rationalisation and acknowledgement of your past, present and future.
• Relationships: Being connected with other people.

By setting realistic goals with a patient, one can attempt to restore and maintain hope. Sometimes one has to breakdown an ultimate (Probably unrealistic) goal into series of more realistic goals to sustain the hope. Communication of a painful truth, may not mean destroying the hope.

Family Matters

Family and family friends matter the most. They are our strongest ally in providing excellent care. Therefore family / friends must be involved to enable them to cope through the most emotional and challenging time.

Family Dynamics

Supporting patient’s family and friends is an integral part of Palliative Care. A supporting and involved family will always improve the psychosocial health of the patients. We cannot afford to neglect the family, while taking important ethical decisions and just focusing on the needs and wants of the patients.

Cancer always changes psychodynamics, either for better or worse. For some, family relationships may not have been good prior to diagnosis, while for others they may have been good / excellent. Therefore the treating physician has to recognise the scope and limitations of family members, in looking after the patients.

Within the families, conflict can arise about a strong desire to confide and receive emotional support or a wish to protect the loved ones from distress by not sharing one’s concern. A conspiracy of silence (collusion) is fairly common and can lead to tension by impending the discussion of feelings, fear, future and preparation of dying and managing.

An intelligent and capable person has the right to know about his/her diagnosis and to decide with whom such information is shared. It is difficult to explain this to relatives, who may feel they are protecting the patient by not letting them know the potentially upsetting news.

Health professionals, have to realize their responsibilities and the legal frame work in which they work. Therefore they have no choice but to ensure that they find out from the patient, with whom they can share the information and to what extent.

Not sharing adequate information with family about diagnosis, management plans and prognosis can create a barrier.

For patients and family to be mutually supportive, it is necessary to help the family move forward form this initial reaction of collusion to a position of greater openness and trust. The family cannot forbid the doctor from discussing diagnosis and prognosis with patient. On the other hand, looking into the ethics of medical confidentiality, Implicit or explicit permission of the patient is required to share the information with relatives/friends.
It is better to tell the patient that if the next of Kin asks specifically for the information, they will have to discuss with them, preferably in patient’s presence.

Involvement in Patient Care

The family may perceive admission to hospital as their defeat, specially when the patient wants to be cared at home, only. Under these circumstances, it helps to emphasise, how well they have been caring the patient at home, but the specific circumstances have meant that admission is necessary. Family’s separation anxiety can be reduced  by encouraging them to stay with the patient and continuing to provide care by adjusting pillows, assisting in movement/sitting, taking the patient to washroom, performing tasks like mouth care, feeding etc.

Planning For Discharge

The care giver must be assessed to see if they are able to meet the needs of the patient at home. They must be trained to look after special needs of the patient, like tube feeding, managing oxygen, providing homecare etc.

Explanation of Treatment

All aspects of patient care should be explained at each stage of the admission, so that the family feels involved. When the patient is close to death, possible approach to their care is explained to the loved ones.

When Patient Dies

• Palliative care does not end when the patient dies. Health professionals also provide care to the family of the deceased patient.
• Family often have false feeling of guilt like, ‘if only, I had not done this’
  
• I should have taken him to the doctor sooner, maybe we could have saved him
  
• In addition to guilt, they also have several other psychosocial, family and financial issues
  
• They are given appointments to share their problems, so that the Palliative Care Physician can try his/her best to solve them.